Rutter's Child and Adolescent Psychiatry Book 2

about which type of care best fits the needs of which group of young people. Future Directions A number of contemporary themes and future directions may be summarized. The trend for shorter in-patient stays and the development of intensive care alternatives to residential treatment is likely to continue but there may well also emerge a reactive emphasis on the value of intensive residential treatment experience for selected conditions. The demand for adolescent units to respond to acute emergencies is likely to continue to grow as the severity of presenting psychopathology moves down the age range. In well-provided health services there may be increasing growth of specialist environments such as specialized eating disorder or forensic units. Referral to intensive care facilities is often thought to follow a bimodal pattern: high when there are relatively few out-patient services, lower as out-patient services are more developed, and higher again when out-patient provision becomes still better and more complex need is identified. This should not imply that the potential demand for intensive services is endless: epidemiological surveys of children with complex needs suggest that the pool of these problems in communities is finite and measurable (Kurtz, 1994). At the complex end of the spectrum, young people are likely to be involved with multiple agencies (Kurtz, 1994). This implies another necessary development; a more sophisticated integration between mental health care, education and social services to form complementary and mutually supporting provision. Some children who now are admitted to in-patient psychiatric units may be better placed in residential social care institutions with psychiatric input or in specialist residential schools; some children in these other institutions may be better placed in primarily mental health facilities. Case management approaches have much to offer in coordinating these complex care pathways and need to be systematically tested. The development of robust alternatives to in-patient care will make possible the ethical use of randomized controlled trials to compare residential, intensive day and outreach alternatives for particular groups or severity of problems. Along with this we can hope for an increasing delineation of methodologies to measure treatment process. The result of these two developments may be further clarification of the specific value of the different components of intensive treatment – for instance, the specific indications for admission. The current evidence suggests that the residential milieu has a particular ability to provide stabilization and rapid reduction of symptomatology and risk. In medium-term treatments it provides an environment in which treatment and rehabilitation can occur outside the demands of the home environment – this is the historical function of respite. Notwithstanding the efforts that have been made in recent years to engage effectively with families, the residential unit is inevitably largely focused on the individual and individual pathology. This can prove highly advantageous in situations where assessment or treatment of complex individual psychopathology is at a premium but needs to be complemented by an emphasis on the environmental context during pre-admission and follow-up. Reduction of inpatient stays beyond a certain minimum negates any value of the in-patient milieu as a treatment in its own right, but the very fact of removal from a noxious mental environment in the community of origin may still result in temporary benefit. Intensive outreach programs have already generated impressive levels of rigorous treatment programming and evaluation. The face validity of this theory of intervention is strong and in keeping with recent research in the developmental psychopathology of a number of disorders. The emphasis on changing presumed maintaining factors in the young person’s environment may result in longer stabilization of treatment gains – although this has not yet been tested. On the other hand, it should be quite apparent that these outreach solutions are no easy option, either financially or in terms of professional expertise. The first randomized trial including costing shows that the extra cost of the service only approaches being met if non-health cost savings are taken into account and there is evidence that the efficacy of the intervention drops if the intensity of the intervention is not adhered to (Henggeler, Schoenwald, Pickrel et al., 1994). Nevertheless, early studies of intensive outreach models are impressive and are undergoing replication outside the developing centers. Most of the comparative studies suggest that intensive outreach does not replace the need for the in-patient option but can certainly reduce its usage. The emphasis in this treatment on the social context of psychopathology is a strength and complementary to in-patient care but runs the risk of overlooking intrinsic problems in the patient. There is no evidence to support the development of intensive services for young people with a specific disorder over the development of generic intensive services, although many of the studies of intensive work have focused on broad unitary disorder services, such as those working with young people with psychosis or substance misuse. The flexibility of intensive services to cross over traditional age ranges should be encouraged, running alongside the move in traditional out-patient CAMHS to extend the client age covered. Day unit care may seem to be a compromise between these two extremes and may often usefully be so. For the most severe problems, however, it may fall between the two and offer insufficient containment for safety or intensive outreach for effectiveness. The great strength of the day unit resource is its flexibility to adapt to different disorders and circumstances. It is unrealistic to believe that the day unit provision can substitute for other intensive treatment modalities. Thus, in an ideal future there would be a set of flexible and complementary platforms for the delivery of intensive care for acute and complex disorders. Service providers would identify themselves as “serious disorder” or “intensive care” services offering a variety of different modes of delivery. In practice, organization and financial constraints will inevitably lead health services to have to make preferred choices. There is now CHAPTER 69 1138 9781405145497_4_069.qxd 29/03/2008 02:59 PM Page 1138

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Sourander, A., Helenius, H., Leijala, H., Heikkila, T., Bergroth, L., & Piha, J. (1996). Predictors of outcome of short-term child psychiatric inpatient treatment. European Child and Adolescent Psychiatry, 5, 75–82. Sourander, A., & Turunen, M. M. (1999). Psychiatric hospital care among children and adolescents in Finland: A nationwide register study. Social Psychiatry and Psychiatric Epidemiology, 34, 105– 110. Stein, L. I., & Test, M. A. (1980). An alternative to mental hospital treatment: Conceptual model, treatment program and clinical evaluation. Archives of General Psychiatry, 37, 392–397. Steiner, H., Marx, L., & Walton, C. (1991). The ward atmosphere of a child psychosomatic unit: a ten-year follow-up. General Hospital Psychiatry, 13, 246–252. Steinhausen, H. C., & Seidel, R. (1993). Outcome in adolescent eating disorders. International Journal of Eating Disorders, 14, 487–496. Street, C. (2000). Whose crisis?: Responding to children and young people in an emergency. Young Minds Magazine, 49, 14–16. Street, C. (2004). In-patient mental health services for young people: Changing to meet new needs? The Journal of the Royal Society for the Promotion of Health, 124, 115–118. Szabo, C. P., & Magnus, C. (1999). Complex partial seizures in an adolescent psychiatric inpatient setting. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 477–479. United Nations Children’s Fund (UNICEF). (1995). The Convention on the Rights of the Child. London. Wells, P., & Faragher, B. (1993). Inpatient treatment of 165 adolescents with emotional and conduct disorders: A study of outcome. British Journal of Psychiatry, 162, 345–352. Wever, C., & Rey, J. (1997). Juvenile obsessive-compulsive disorder. Australian and New Zealand Journal of Psychiatry, 31, 105–113. White, M. K., Godley, S. H., & Passetti, L. L. (2004). Adolescent and parent perceptions of outpatient substance abuse treatment: A qualitative study. Journal of Psychoactive Drugs, 36, 65–74. White, R., Carr, P., & Lowe, N. (1990). A Guide to the Children Act 1989. London: Routledge. Wilmshurst, L. (2002). Treatment programs for youth with emotional and behavioral disorders: An outcome study of two alternate approaches. Mental Health Services Research, 4, 85–96. Wolkind, S. N. (1974). The components of affectionless psychopathy in institutionalized children. Journal of Child Psychology and Psychiatry, 15, 215–220. Woolston, J. L. (1989). Transactional risk model for short and intermediate term psychiatric inpatient treatment of children. Journal of the American Academy of Child and Adolescent Psychiatry, 28, 38–41. Woolston, J. L., Berkowitz, S. J., Schaefer, M. C., & Adnopoz, J. A. (1998). Intensive, integrated in-home psychiatric services: The catalyst to enhancing outpatient intervention. Child and Adolescent Psychiatric Clinics of North America, 7, 615–633. Worrall, A., & O’Herlihy, A. (2001). Psychiatrists’ views of in-patient child and adolescent mental health services: A survey of members of the child and adolescent faculty of the Royal College of Psychiatrists. Psychiatric Bulletin of the Royal College of Psychiatrists, 25, 219–222. Wrate, R. M., Rothery, D. J., McCabe, R. J. R., & Aspin, J. (1994). A prospective multi-centre study of admissions to adolescent inpatient units. Journal of Adolescence, 17, 221–237. Wright, C., Burns, T., James, P., Billings, J., Johnson, S., Muijen, M., et al. (2003). Assertive outreach teams in London: Models of operation. Pan-London Assertive Outreach Study, Part 1. British Journal of Psychiatry, 183, 132–138. Zimet, S. G., & Farley, G. K. (1985). Day treatment for children in the United States. Journal of the American Academy of Child Psychiatry, 24, 732–738. CHAPTER 69 1142 9781405145497_4_069.qxd 29/03/2008 02:59 PM Page 1142

The child mental health consultant1 assesses the psychiatric status of an ill child in a hospital environment. The child’s phase of development, temperament, type and stage of illness, family dynamics and level of pain and anxiety are among the multitude of contributing factors determining the complexity of clinical care and research in the pediatric consultation population. Every consultation encompasses aspects of biology, mediating influences of family and community, and the primacy of personal meaning in defining an experience as bearable or traumatizing (Eisenberg, 1995). Mental health consultants assess the following: 1 Children with primary psychiatric illnesses leading to medical conditions; 2 Psychiatric manifestations of medical illnesses or treatments; 3 Adjustment to a chronic or life-threatening illness; and 4 Differential diagnosis of psychosomatic illness. The consultant’s scope includes working with anxious or difficult parents and liaison with the ward staff. The child mental health consultant’s role may include offering didactic lectures for medical staff or parents. The consultant should also be an advocate for children, working with hospital leadership to develop more psychologically attuned standard practices. It is hoped that research in best practices for the medically ill child will increasingly guide future practice, but the limits of current evidence-based practice leave us relying on clinical experience, practice parameters and smaller research studies which are commonly disease-specific (AACAP, in press; for a fuller clinical approach see Rauch & Jellinek, 2002). History Adult consultation psychiatry arose in general hospitals during the 1930s, with the recognition that a mind–body dichotomy was an inadequate approach to providing quality medical care. Best practice demanded attention be paid to the psychological issues that were acknowledged to impact on medical illness and treatment (Ortiz, 1997). As the integral role of psychological factors was established in adult medical care, similar attention was focused on the needs of children. Although a role for psychiatry with the medically ill child dates back to the 1930s (Lask, 1994; Work, 1989), consultation psychiatry by no means exists in every pediatric medical and surgical setting today. Recent articles continue to tout the benefit of collaboration between child psychiatrists and pediatricians, pediatric surgeons and pediatric nursing staff (Fritz, 2003; Watson, 2006), and encourage the establishment of consultation services and recommend their increased utilization. Consultation services require financial support. In the USA, the National Institute of Mental Health (NIMH) provided grant money in the 1970s to support interdisciplinary pediatric and psychiatric clinical collaborations, thus increasing the number of consultation services nationwide. This seed money supported unreimbursed activities such as comprehensive evaluation and interdisciplinary team meetings. As this support ended in the 1980s, most consultation services were forced to downsize and decrease the range of activities and services offered (Shaw, Wamboldt, Bursch, & Stuber, 2006; Wright, Eaton, Butterfield et al., 1987). In the USA, managed care has carved out psychiatric services from medical services provided to patients. As a result, consultation liaison services face barriers to reimbursement for psychological care. A recent report found that 60% of programs received lower rates than previously for service provided and collection rates for services covered averaged only 30% (Shaw, Wamboldt, Bursch et al., 2006). Throughout Europe, consultation resources are limited, and they are virtually unavailable in many developing countries. Clinically, the approach to consultations has seen attention shift away from looking at the mother–child dyad as the source of psychopathology and toward appreciating the impact of pediatric illness on the entire family (Labay & Walco, 2004; Svavarsdottir & Sigurdardottis, 2005). As the medical care of children, like that of adults, is moving toward shorter hospital stays and greater utilization of out-patient settings for treatment of chronic and life-threatening illness, mental health consultants will be called upon to shift their availability to encompass these out-patient settings. This chapter focuses on the medical in-patient setting, but it is important to recognize that child psychiatry consultation liaison covers a much broader terrain. 1143 Pediatric Consultation 70 Annah N. Abrams and Paula K. Rauch 1 In this chapter, the term mental health consultant refers to a child psychiatrist or child psychologist who is a mental health professional providing psychological and/or psychiatric care to medically ill children in an in-patient hospital setting. 9781405145497_4_070.qxd 1/04/2008 10:53 AM Page 1143 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

Psychological Distress in the Pediatric Population Children with medical illnesses serious enough to warrant hospitalization are recognized as at increased risk for emotional disorders (AACAP, in press). Those conditions that result in long-term physical disabilities or impact on the central nervous system pose additional risk (Meyer, Blakeney, Russell et al., 2004; Poggi, Liscio, Adduci et al., 2005a; Poggi, Liscio, Galbiati et al., 2005b), as may certain symptoms and challenges associated with specific diseases (AACAP, in press). Disease-specific rates of psychological symptomatology are found elsewhere in this textbook. Estimates of psychological distress in hospitalized children and adolescents vary and range from 20% to more than 35% (Loutherenoo, Sittipreechacharn, Thanarattanakorn, & Sanguansermsri, 2002; Stoppelbein, Greening, Jordon et al., 2005). These rates reflect the particular medically ill and socioeconomic populations found in any given pediatric hospital and so vary substantially. Collaboration Between Pediatricians and Mental Health Consultants Pediatricians, nurses and parents caring for a child with behavioral, adjustment or coping difficulties often see the benefit in their improved ability to manage a child’s illness when a child psychiatrist or psychologist is part of the medical team (Carter, Kronenberger, Baker et al., 2003). Dissatisfaction with mental health consultations has been linked to a perception that the child psychiatrist was not available quickly enough or did not communicate findings adequately, or that findings were not tailored to the needs and realities of the referring pediatrician (Burket & Hodgin, 1993). Older studies also suggested that lifelong consultation practices may begin with access during training (Bergman & Fritz, 1985). In a study from the same era, mental health consultants for their part expressed frustration that consultations were requested too late in the course of the hospital stay instead of seeking a psychiatric assessment as an integral part of the initial work-up (Fritz, Pumariega, & Fischhoff, 1987). Barriers to Requesting Consultation Barriers to child mental health consultation include discomfort with talking to the patient and family about psychiatric consultation, lack of availability of child mental health consultants or the lack of their availability in a timely manner. Funding for child mental health services as well as misperceptions about the role of child psychiatrists in the care of medically ill children are additional obstacles. Hospital financial priorities and national health care policy as well as educational initiatives between clinicians and within hospital units are necessary to address some of these issues. Consultation Models Consultation service models are determined by the size of the patient group served, the illness severity of treatment populations and the availability of child mental health consultants. When consultants are available only for a limited number of hours, they need to utilize some of their time to supervise nurse clinicians, social workers or others, who are available to do more direct clinical service, reserving the remaining consultation time for seeing the most challenging cases. In many pediatric settings, child psychologists are the primary child mental health consultants, with child psychiatrists limited to acting as pediatric psychopharmacologists (Shaw, Wamboldt, Bursch et al., 2006). Mental health consultants, regardless of their training discipline, need understanding of the disease process, medical management of relevant illnesses and a skill set that includes behavioral interventions such as desensitization, hypnotherapy and behavior modification. Consultations can be initiated on a case-by-case basis, by protocol or a combination. In the case-by-case model, the pediatrician requests a consultation after assessing an individual patient, whereas consultation by protocol systematizes psychiatric consultation for children with certain diagnoses or risk factors. Examples of protocol-driven consultation include routine consultation for patients who are candidates for transplant or have been admitted after suicide attempts. Protocols can be based on factors other than the diagnosis, such as hospitalization lasting more than 2 weeks or injury requiring intensive care unit (ICU) admission. In the setting of short hospital stays, protocols maximize early identification of need and minimize time before consultation is initiated. When possible, for continuity the same consultant should follow a child over multiple hospitalizations or from in-patient to an outpatient specialty clinic. In an older study of several hundred consultations, onethird of the consultation requests were ascribed to staff-related conflict (Hengeveld & Rooysman, 1983). Arguably, no consultation for a hospitalized child can be carried out effectively without the integral “liaison” component of understanding the child’s condition in the context of the concerns arising from members of the treatment team (Hengeveld & Rooysman, 1983; Tarnow & Gutstein, 1982). Liaison requires understanding and respect for the roles of each member of the multidisciplinary treatment team as well as sensitivity to particular challenges inherent in each discipline’s treatment demands. Unfortunately, the important liaison role of mental health consultants has decreased in many institutions because of lack of funding (Shaw, Wamboldt, Bursch et al., 2006). Psychiatric consultation requests routinely differ according to the particular hospital setting. 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Kronenberger, Baker et al., 2003). Psychiatric consultation for the pediatric ICU tends to be more acute and requires the consultant to make assessments and recommendations more rapidly (DeMaso & Meyer, 1996). Work with medically ill children is rewarding, but it can also arouse powerful feelings of sadness, frustration and helplessness. Pediatric units may seek to address the emotional challenges experienced by the medical team. The goal is to provide staff support that will assist them in their ability to provide the best care for patients and may prevent long-term burnout (Levi, Thomas, Green et al., 2004; Maytum, Heiman, & Garwick, 2004). For example, an emergency department or ICU may institute a time to meet together as a team after a traumatic case or upsetting outcome. A pediatric ward may institute bereavement rounds following the death of a patient to address the emotional toll of caring for terminally ill children and to share remembrances of the child. When a member of the multidisciplinary medical team faces a personal or professional challenge that interferes with the ability to provide quality care, the consultant may be asked, in a liaison role, to facilitate referral to psychiatric treatment for the team member. The consultant should not personally provide treatment for a team member, as this would be crossing an essential boundary in a long-term working relationship. If a team member is believed by others to be impaired but seems unaware of his or her problem, concerned colleagues may approach the mental health consultant for direction on how to help this individual. The consultant can encourage the concerned colleague to share observations with the appropriate supervisor and may meet separately with the supervisor or director to share relevant personal observations. Behaviors that put patients at risk are mandated to be reported to the appropriate overseeing body such as the chief of service, a regional board of medical or nursing registration or hospitalbased board. Approach to Consultation Requests The first task for the consultant is to understand what concerns have led to the consultation request by speaking with the consulting pediatrician or staff member, listening to the expressed concerns and asking for elaboration about concerns that seem present but not disclosed. It is helpful to work together to establish realistic goals for the initial consultation, with a plan to set additional goals after the initial meetings with the child and parents. The consultant should seek supporting information available from other members of the treatment team and from the hospital chart. It is useful to gather observations from several individuals as the child may behave differently in different settings, or may have established warmer relationships with some team members than with others. After the initial assessment, and with permission from the parents or guardian, the consultant may seek input provided by sources outside of the medical arena such as an out-patient psychotherapist, school professionals or members of other involved social agencies such as the department of social services, or the court system. While the consultant will gather data from many sources, a basic tenet of consultation work is being clear about with whom the consultant is consulting. Ultimately, the goal of consultation is to facilitate the child’s receipt of optimum care, but the consultant may be serving the primary pediatrician, a subspecialist or a subspecialty team. Usually, what serves the child best is helpful to many team members and to the family, but there may be conflicts. For example, the consultant to the pediatrician may recommend that an aggressive interventional gastroenterologist chosen by the parents may not be the best choice for a somatizing child with recurrent abdominal pain. It is best if the pediatrician or subspecialist, with whom the family already has a relationship, informs the parents of the decision to obtain a psychiatric consultation and its purpose. Psychiatric consultation may be presented as part of the diagnostic protocol, a way to help the team understand how the child is feeling and to help the child cope with the difficult circumstance that led to hospitalization or as a response to the challenges that hospitalization has presented. The mental health consultant may be asked to help the referring pediatrician articulate the reason for the consultation in a positive manner. Some parents and children are uncomfortable with the idea of a psychiatric consultation, and yet appreciate the intervention upon finding the child mental health consultant respectful, knowledgeable and attuned to the needs of the child and family. Other parents will be resistant, reluctantly agree under some pressure from the referring pediatrician, and perhaps remain ambivalent about the benefit of the assessment or come to appreciate its value. For those families who refuse consultation, the consultant may meet with the team in a liaison capacity and assist the team without directly interviewing the child. If the psychiatric consultation is deemed urgent, the pediatrician should seek input from the hospital legal counsel about the appropriate way to proceed within the legal system in which he or she practices. The British Medical Association and the American Academy of Pediatrics address the issues of consent and the right to refuse treatment in persons under the age of 18 and provide very helpful guides for the clinician in practice (AAP, 1995; BMA, 2001). Depending on the age and circumstances of the child’s condition, the consultant will decide whether to meet with the parents first, the child first or both together. Meeting with older children without a parent present at some point in the initial work-up allows them to voice private concerns that may be censored when a parent is present. Even young children may not want to say things in front of parents that they believe the parent will find upsetting. Children under 6 years may be more comfortable meeting the consultant with a parent. Because the goal is to facilitate the child being most forthcoming in talk and play, it is key to respond to the child’s preferences for the initial interview. 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are not appropriate to share in the child’s presence. Similarly, many parents of older children find it easier to be candid about their worries in the absence of the child. Older children may be uncomfortable knowing that their parents are talking to the consultant without knowing what is being said. Nonetheless, it remains key to the initial assessment to provide an interview setting that facilitates the child and parent being independently able to express feelings freely, and this goal can be articulated to the child and parent. Assessing the Child Premorbid Functioning of the Child and Family When assessing a hospitalized child, the consultant is seeing only “a snapshot” out of the child’s life. Some families are confronting a new diagnosis or change in the prognosis, while others may have had time to develop an ongoing coping strategy in the face of a chronic illness or a lengthy treatment protocol. Assessment should recognize the potential for wide variation in coping at different points in the unfolding medical experience. It may be helpful to utilize a biopsychosocial model to understand the child’s coping and family’s functioning prior to the hospitalization. Under the “bio” heading, the consultant will want to understand the particular challenges presented by the child’s medical condition and interplay of medications. Under the “psych” heading, the consultant will want to learn about depression and anxiety preceding the medical condition as well as psychological strengths and resiliency. In the “social” arena, the consultant wants to know about the child’s relationship with peers and his or her functioning at school. Developmental Perspective Development is an important lens through which a childhood medical illness can be seen. A full review of the interplay of development and medical illness is beyond the scope of this chapter, but a few key developmental points are highlighted to illustrate common issues. Infants and toddlers cannot understand the gravity of a given diagnosis. They live in the moment, experiencing the medical condition and treatment according to the physical limitations and discomforts imposed. Infants rely on key caretakers to hold and soothe them and to make the hospital environment feel safe. It is important for the hospital staff to support infant– parent attachment, and not allow treatments and technologies to interfere with this key emotional milestone. The pediatric unit can provide a milieu that supports breastfeeding mothers, and allows rooming-in by parents. Very young children (3–6 years) are egocentric (i.e., they understand all events as occurring in relation to them). They have associative logic, which means that for them any two unrelated things can be understood as if one is causing or explaining the other. The combination of egocentricity and associative logic leads to magical thinking. Magical thinking is the weaving together of fantasy and logic to explain how the young child caused something to happen. In the medical setting, it is frequently the child’s misconception that having a “bad illness” means he or she did something wrong and is being punished. It is helpful to get young children (and older children as well) to elaborate their understanding of the etiology of their medical conditions to uncover self-blaming misconceptions and correct them. When young children have a life-threatening illness, parents often wonder if the child is worrying about dying. At this age, children do not yet have the cognitive capacity to comprehend forever, and envision death as a reversible event. The young child is likely to demonstrate the most affect around separations, such as having anxiety about going to sleep at night in his or her own bed, or wanting a parent to promise to be there when they wake up from surgery. At this age, children cannot localize a medical condition to a specific body part, so they feel particularly physically vulnerable when ill. Faced with needlesticks, intravenous medication and surgical procedures, they are often fearful. They rely on parents and medical staff to prepare them for procedures. Older children (7–12 years) can understand simple functional explanations of medical conditions. Many will pride themselves on mastering the names of medicines, illness-related terminology and how to use hospital equipment. Children of this age look for simple cause and effect etiologies for illnesses. They can understand viral illnesses being caused by “germs,” but are perplexed when there is no clear causal explanation (e.g., why they have cancer without having smoked cigarettes). It is important to explain illness and treatment simply and clearly. In the context of understanding why a treatment plan is being initiated, the medical staff should seek the child’s assent to procedures and treatments. In this age group, “rules rule” and it is troubling to the child that so often medical illness does not follow the rules (e.g., the child avoids asthma triggers and has an asthmatic attack anyway). One of the challenges of working with the preteens is to capitalize on the children’s pride in trying hard and their wish for competency, while keeping them from getting too disappointed by setbacks that occur in spite of their own best efforts. Adolescents have the capacity for abstract thinking, and thus are able to understand the chance bad luck of having an uncommon, life-threatening or chronic illness with the same cognitive complexity as adults. Education is a prerequisite for behavioral change, but on its own is not sufficient. Commonly, teenagers do not have the maturity to incorporate the consistently health-promoting behaviors they know they should engage in into appropriate changes in lifestyle. Turning cognitive understanding into behavioral change is the common battleground of adolescent and authority figure – parent or physician. Assent for medical treatments is sought from the younger child, while consent is sought from adolescents who have the cognitive ability to comprehend the purpose of treatment and the ramifications of refusing treatment (BMA, 2001). Although some physicians may view seeking consent from an adolescent for treatments and procedures as time-consuming and burdensome, knowing that parents must give legal consent to proceed, these discussions foster trust and build a valuable alliance between patient and clinician. CHAPTER 70 1146 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1146

Adolescence is a self-conscious time, with the emergence of sexual interests and heightened reliance on peer group norms for style and status. Medical illnesses or treatments that affect appearance are particularly difficult (e.g., becoming Cushingoid on steroids or bald with chemotherapy). The medical staff is challenged to find ways to respect the teenager’s ageappropriate wish to be more independent in the face of illness that so often increases dependency. As children with chronic illnesses live into adulthood, the transition to young adulthood and understanding of associated issues become relevant. Young adults negotiate intimate relationships, career decisions, independence from parents, and sometimes relocation or parenthood. One challenge that the treatment team and patient may face is whether to transition care from a pediatric into an adult setting, which often necessitates a new treatment team. Some patients may prefer to be on an adult ward or waiting room, but may find it very difficult to leave lifelong caretakers and the pediatric model of care. Specific Challenges Associated with a Given Medical Condition Each medical condition carries its own specific challenges. When the consultant is familiar with common frustrations or limitations imposed by a particular illness, this can provide a kind of credibility in the process of acquiring a child’s and parent’s trust as they relate what is hardest for them. Routine consultation to the same pediatric unit leads to the consultant becoming familiar with technology, treatment protocols and terminology, all of which makes it easier for the child and family to tell their medical story and feel understood. Mental Status Examination Hospitalized children have many reasons for an altered mental status including delirium, CNS changes secondary to medical conditions, effects of medications and trauma. A formal mental status examination should be part of the medical record including observations of appearance, gross and fine motor function, speech, mood, affect, thought, suicidal ideation, memory and cognition. By performing a mental status assessment, the consultant may uncover significant mental impairment that has gone undetected in spite of multiple specialists seeing the child. Medically ill children may be developmentally delayed or emotionally immature. It is helpful for the consultant to integrate the information from the mental status examination and premorbid school and developmental information to assist the medical team in understanding the child’s ability to comprehend medical information. The Family No child can be understood independently of his or her family. In the initial evaluation it is therefore essential to assess the family’s level of functioning and their ability to support the child in the hospital and through the anticipated treatment and outcome. During hospitalization, parents often have to cope with new and anxiety-provoking information. Information presented by multiple caregivers is common on a medical unit and may lead to inconsistencies: one person emphasizing a particular laboratory value but another devaluing its importance, one suggesting discharge is imminent but another indicating it may be many days away. Parents and older children may find these inconsistencies confusing and upsetting. Many parents identify the continuous feelings of uncertainty as the hardest aspect of adapting to the child’s illness. The focus of the uncertainty changes during the course of the hospitalization as the challenges of the treatment evolve from the time of diagnosis to the child’s changing appearance and ultimately to when will the illness recur or what follow-up is necessary (Diaz-Caneja, Gledhill, Weaver, Nadel, & Garralda, 2005). Some parents derive support from other parents on the pediatric unit whereas others report feeling further traumatized by witnessing other families in crisis. Parental anxiety and distress are associated with a child’s psychological adjustment and capacity to cope (Bonner, Hardy, Guill et al., 2006; Sawyer, Streiner, Antoniou, Toogood, & Rice, 1998; Wagner, Chaney, Hommel et al., 2003). The consultant can help the medical team be mindful of the importance of addressing the anxiety around uncertainty and facilitating consistent communication. Asking parents to share the history of the current illness, from the first symptoms through to the present hospital stay, allows the consultant to learn about the parents’ experience of the medical care (i.e., to what extent have they felt responded to or ignored in the process of diagnosis and treatment). It is helpful to understand the parents’ views of past and present medical caregivers as well as their experience of their own role in the child’s medical condition. The stress of a child’s illness and treatment may uncover parental discord and perhaps coincide with divorce although it should not be assumed to be causal. In a recent study, the rates of divorce after a child has died from cancer were not found to be increased relative to the general population (Kreicbergs, Valdimarsdottir, Onelov et al., 2005). An assessment of the family should include psychiatric history (including use of substances). It is helpful to ask questions about depression symptoms for each parent and the siblings. Some parents may increase their own risk-taking behavior including use of alcohol or driving with less care. Many parents benefit from being reminded of the importance of eating and sleeping so that they do not compromise their own health during what may be a long period in which the sick child will need their additional care. The family’s experience is affected by past experiences with illness and loss. The consultant will want to know if any other family members have had the same or similar illnesses, what the experience was of their care and the outcome. Helping the parent differentiate the current medical situation from past experiences helps the parent be more attuned to the child’s actual needs. Siblings are often the forgotten sufferers (Murray, 2002; Wilkins & Woodgate, 2005). The sick child is commonly the object of everyone’s attention and recipient of many gifts; while the siblings often live with disrupted schedules, few gifts and often absent, less emotionally available parents. The consultant PEDIATRIC CONSULTATION 1147 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1147

and social worker can model important empathy for the plight of the siblings, and help parents with ways of addressing the needs of their well children. Pediatric hospital staff members may have a harder time working with some parents than with their child. The consultant can help the team understand the family better and feel more empathy for difficult behaviors. Difficult parents often cannot bear the feelings of helplessness, and vent their anger and frustration on hospital staff by being critical and devaluing (Groves & Beresin, 1999). Presenting the Assessment to the Treatment Team After meeting with the child and family for the initial assessment, the consultant will share observations and recommendations with the referring pediatrician and available team members, and write a note in the hospital chart. The preliminary formulation and recommendations should avoid the use of psychiatric jargon. Clear practical recommendations to improve coping, address behavioral problems, treat primary psychiatric disorders and maintain safety are most helpful. Hospital records are permanent documents and should not be used for private or informal communications between clinicians. One should assume that patients and parents will read the record, as can hospital staff and insurers. No one should write pejorative comments about other clinicians, patients or families in the hospital record. The consultant should be thoughtful about including personal information about the patient or family members, avoiding what is not germane to the care of the patient, such as a past history of parental substance abuse or marital infidelity. When presenting recommendations, safety must be addressed first and an understanding of the urgency and time frame in which the referring doctor needs assistance must be attended to by the consultant. Sharing an understanding of motivations that may underlie maladaptive behaviors can increase empathy for the child and family, but the consultant must work with the team to arrive at concrete suggestions that can be implemented by the team in order for the consultation to be experienced as valuable. Emergency Consultations The most common emergency consultations relate to the suicidal or self-abusive child. The consultant’s first recommendations focus on the child’s immediate safety, recognizing that hospital units are not designed with the safety of a self-injurious child in mind. There is potentially dangerous medical equipment throughout the unit. It is therefore necessary to assess carefully the child’s risk for self-harm in this setting. After having made an impulsive suicide attempt or gesture, some children are frightened, regret their actions, feel supported by their families and may be assessed as being at low risk for self-injury while hospitalized. Others regret that the suicide attempt was unsuccessful or are uncommunicative, leaving the consultant unsure of their mental state. When unsure, one must err on the side of safety, providing continuous observation of these children on the pediatric unit. Once safety has been assured, the consultant can assess the precipitants for the acts of self-harm and recommend appropriate treatment in the hospital and disposition (see chapter 40). Behavior that disrupts essential medical treatment also requires immediate intervention. Such behavior may be driven by extreme anxiety, delirium, disinhibition following head injury or as a side-effect of medication use. Angry threatening behavior in a child with a clear sensorium, but who views the essential medical treatment as an unnecessary assault can also create an emergency situation. Assessment of the etiology of the difficult behavior will determine the appropriate intervention. Parental behavior may be the reason for an urgent consultation with the mental health consultant or the team social worker. Parents may be refusing essential medical treatment for the child or acting bizarrely. The reason for the parental actions may be unclear or may be revealed to be beliefs at odds with standard medical practice, mistrust of the hospital staff, psychiatric illness in the parent or extreme anxiety. Hostile parents can interfere with critical care by frightening the medical staff. Interventions will be determined by an understanding of the etiology of the parents’ behavior and may include the appropriate use of hospital security personnel. The consultant may be asked to interact directly with the parent to help the referring physician work with the family or to recommend further assessment, including social services or court interventions. Often, parents who are obstructing necessary care for their child are doing so because they are themselves overwhelmed with helplessness and are trying to control what they see as uncontrollable. By helping the parent to feel that he or she is an essential member of the decisionmaking process and thus has some control in productive ways, many parents will step out of a combative stance and into a more collaborative one. There are specific legal interventions that are implemented when parents prevent a lifesustaining treatment, such as a blood transfusion for a child with life-threatening blood loss. These interventions are determined by the legal parameters of the place of practice. Primary Psychiatric Illnesses Depression Depression is common in the hospitalized child. It may be a secondary response to the stress of acute or chronic illness, or it may be the primary presenting symptom of psychosomatic illness or behavioral problems including self-harm. Practice patterns vary from country to country (see chapter 37). One barrier to the appropriate treatment of depression in hospitalized children is the misconception that depressed mood and symptoms are an appropriate response to serious illness. Another barrier to treatment is the difficulty of making the diagnosis of depression in a medically ill child given the overlap of somatic symptoms and depressive symptoms (Shemesh, Yehuda, Rockmore et al., 2005a). Individual and family therapy, play therapy, behavioral therapy and medication are CHAPTER 70 1148 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1148

useful modalities in the hospital setting. Our clinical experience supports the use of antidepressants for depression in the medically ill older child or adolescent. Selective serotonergic reuptake inhibitors have become the antidepressant of choice as they are generally well tolerated, have limited interactions with other medications and present a lower risk of intentional or accidental overdose (see chapter 37). Anxiety Anxiety can be secondary to the stresses of the medical condition and treatment or be pre-existing. Children with preexisting generalized anxiety or specific fear of doctors, needles or shots are likely to have more difficulty adjusting to medical assessment and treatment. In addition to the obvious discomfort severe anxiety causes the child and parents, anxiety can interfere with procedures and complicate history-taking and symptom assessment. Age-appropriate explanation of medical interventions for older children, and medical play with explanation for younger children, can decrease anxiety. Children from around 6 years of age can learn a variety of coping techniques to help them with anxiety-provoking procedures. Many children will respond to distraction, breathing exercises, visualization or hypnotherapy (Butler, Symons, Henderson, Shortliffe, & Spiegel, 2005; Gershon, Zimand, Pickering, Rothbaum, & Hodges, 2004; Mundy, DuHamel, & Montgomery, 2003). Clinicians must pay attention to minimizing pain for every child (Greco & Berde, 2005). Effective interventions including preparation, relaxation, distraction, use of anesthetic creams before procedures, and treating chronic and acute pain with analgesics, significantly reduce the amount of stress experienced by the child (Schiff, Holts, Peterson, & Rakusan, 2001; Young, 2005). For young children, all painful procedures should occur in a treatment room and not in the child’s bed nor in the playroom. Protecting the child’s bed and the playroom as safe havens helps the young child relax in these settings. Even with quality pain management, relaxation techniques and preparation for procedures, some children will continue to be too anxious to comply with treatment and may experience sleepless nights, be nauseated or frantic during the hospital stay or in anticipation of visits to the hospital. Benzodiazepines may be helpful adjuncts for lessening debilitating anxiety. In young children, one must be aware of the potential for benzodiazepines to disinhibit children and thus worsen coping difficulties. Anorexia Nervosa Anorexia nervosa is characterized by significant weight loss or the absence of appropriate weight gain for age and height in the setting of distorted body image and fear of gaining weight (see chapter 41). Pediatric hospitalization usually occurs when there has been rapid or profound weight loss, cardiovascular abnormalities, electrolyte imbalance and hypothermia. The goal of pediatric hospitalization is medical stabilization with nutritional assessment and treatment, psychological assessment of the child and family, and recommendation for level of psychiatric intervention after medical stabilization (Andersen, Bowers, & Evans, 1997). If the anorexic patient has been in out-patient psychotherapy, it is important to seek input from the out-patient therapist. Medical hospitalization often represents failure of the out-patient treatment for the child or adolescent. It is often helpful to institute a detailed anorexia protocol with very restricted activity, including bed rest, observation during and directly after meal times, bathroom privileges only after weight gain has begun, and limited phone contact and visitation with family. As the child demonstrates that he or she is able to meet nutritional goals, privileges are added. Once the child is medically stable recommendations about disposition can be initiated as outlined in chapter 41. Pediatric and nursing staff may feel frustrated and angry at anorexic patients, whom they may see as making themselves ill. This is in stark contrast to other children on the pediatric unit who are viewed as struggling to overcome “real” illnesses. Regular team meetings provide an opportunity for staff members to voice the feelings engendered by the patient, ensure that the protocol is being instituted consistently, unify the team in providing quality and compassionate care and provide an opportunity to give consistent information to the patient and their family. Psychosomatic Illness (see chapter 57) Some children are admitted to pediatric units with intense persistent somatic complaints such as headaches, abdominal pains, bowel complaints, neurological symptoms or fatigue. The pediatrician may suspect that the intensity of the symptoms or the combination of complaints exceeds what can be explained by a medical condition and reflects underlying emotional factors and may thus seek a psychiatric consultation. The pediatrician’s assessment that psychological factors are influencing the somatic presentation is usually at odds with the child’s and parents’ understanding of the etiology of the condition. Often the child and parents are seen as overly invested in an exhaustive medical work-up to prove a purely medical etiology. In psychosomatic illness, the somatic complaints are an unconscious expression of emotional issues, thus the child and parents believe that the child is seriously ill and needs this work-up despite its risks. Commonly, psychiatric consultation is resisted, because it is viewed as evidence that the medical team either does not believe the symptoms or medical condition to be “real” or is unwilling to investigate fully all the medical possibilities. It is common for the family to seek multiple medical opinions, and often to choose the most aggressive specialists (e.g., those who perform the most diagnostic testing or prescribe the most medications). Diagnostic tests may be repeated to satisfy parental demands for action or in an attempt to decrease persistent patient and parental anxiety about undetected serious illness. Parents may overvalue insignificant positive findings from the diagnostic work-ups to vindicate their belief that a yet undiscovered medical etiology exists. Hospitalization can be viewed as evidence of more serious psychosomatic illness and may be an important opportunity PEDIATRIC CONSULTATION 1149 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1149

for a coordinated care plan addressing psychological and medical issues together. The psychiatric consultant must be willing to listen to the somatic symptoms and associated medical hypotheses in order to establish an alliance with the patient and family. Presenting the consultant’s role as one of helping the child cope with chronic symptoms that are interfering with school, peer activities or family life is less threatening than suggesting that the consultant has been sought because the symptom intensity reflects psychological issues. The child and family must be reassured that the presence of the child mental health consultant will not be associated with reduced access to the medical team, but is truly an adjunct to ongoing medical care. The pediatrician has the important role of reexamining the child regularly, reassuring the patient and family that no worrying new findings exist and not acquiescing to unnecessary testing. Non-compliance Non-compliance with medical treatments is common, ranging from estimates of 50% to as high as 88%. Surprisingly, confidence in the efficacy and importance of the treatment does not always translate into improved compliance rates (Van Sciver, D’Angelo, Rappaport, & Woolf, 1995). However, physicians should recognize that education and an alliance with parents and children can improve patient compliance rates (Cork, Britton, Butler et al., 2003; Feinstein, Keich, BeckerCohen et al., 2005). Furthermore, beliefs about why a medication is not adequately treating an illness also need to be addressed to improve compliance (Rubin, 2004). The impact of non-compliance ranges from essentially harmless to lifethreatening. Medical non-compliance in a particular child is multi-determined, associated with medical education, active versus passive coping style, pride versus embarrassment with respect to self-care, impulsivity, family support, peer support and relationship with medical providers (Dinwiddie & Muller, 2002). It may also be a function of underlying psychiatric illness including depression, anxiety, oppositional defiant disorder and attention deficit disorder. When consultation is sought for non-compliance, usually it is because of risk to the child’s health, escalating conflict in the family or frustration with inappropriate use of medical resources. The consultant’s task is to understand why the child is non-compliant and to work with the team to modify aspects of treatments that trouble the child where possible, while working to help the child and family adopt strategies that support clinically important treatments. Treatable psychiatric disorders need to be identified and addressed. Treatment-promoting supports – including disease-specific support groups, more frequent meetings with clinicians, and psychoeducation groups – can be helpful. Child Abuse (see chapters 28 and 29) In the consultation setting, it is appropriate to restate the importance of suspecting abuse. Without educated suspicion, abuse will often go undetected. Injuries to body surfaces that do not commonly bear the brunt of an accidental fall, multiple broken bones or bruises in various stages of healing, bruises that resemble finger marks, belts or cords are highly suspicious. Implausible or inconsistent stories from caretakers, and inappropriate delay in bringing a child for medical care should raise suspicion, as should caretakers who ascribe the injury to siblings or self-inflicted injuries. Suspicion of abuse must be reported to the appropriate social agency. When abuse is suspected, the child should be fully examined for other physical signs. It is important to notify authorities of other children known to be in a potentially unsafe home. The pediatric unit may serve as a safe haven for a child while allegations are being investigated. Coping with Chronic Illness Chronically ill children should not be defined by their illnesses (i.e., there is no typical child with diabetes or classic child with asthma). On the contrary, chronically ill children have the same range of personalities and coping styles seen in healthy children, and are engaged in mastering the developmental milestones and challenges they share with their peers. Estimates of psychological morbidity associated with chronic illnesses in childhood range 10–30% (Bauman, Drotar, Leventhal, Perrin, & Pless, 1997), which is only slightly higher than the general pediatric population (Barlow & Ellard, 2006). Greater morbidity is associated with multiple admissions to hospital (Geist, 1977). Other documented risk factors for adaptation to chronic illness include physical disability and brain dysfunction, pain frequency, younger age, poverty, singleparent family and increased psychological symptoms in the parents (Knapp & Harris, 1998). Specific illnesses present unique challenges, such as the dietary restrictions in diabetes (Patton, Dolan, & Powers, 2006) or the decreased exercise endurance in advancing cystic fibrosis. However, many factors influence how problematic a diseasespecific challenge is for an individual child. It is the consultant’s job to understand the unique meaning of the illness to the child and family, and to assist in the process of adaptation. Disease-specific research in common chronic illnesses can inform clinical approaches with these illnesses and can offer useful guidance for approaches to children with other medical conditions. The consultant needs to elucidate the child’s subjective experience of the illness, such as what is the hardest aspect of the illness or treatment from the child’s perspective, how does it affect the child’s image of themself, and are there specific worries about the future? Enquiries about the impact on peer interactions, and favorite activities, areas of conflict between the child and parent or the child and physician in relation to the illness, and the child’s perception of the parents’ worries may be useful. Variations of these questions can be asked of the parents and siblings. Chronic illness requires adjustment on the part of the child, the family, and sometimes the school, friends and organizers of activities. Efforts should be made to assist a child’s ability to continue with age-appropriate activities and special interests. Children with personal strengths – whether in academics, CHAPTER 70 1150 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1150

sports, music or interpersonal skills – may have an easier time accommodating to the limits imposed by the illness and treatment. Temperament can affect a child’s ability to adapt, with more flexible and outgoing children likely to bear the uncertainty and limitations imposed by illness more easily. Parental support, warmth and attitude toward the illness and the child’s adaptive style are key. Parental anxiety, anger, sadness, guilt or blame can impede adjustment (Vance & Eiser, 2004; Wagner, Chaney, Hommel et al., 2003). Asthma Asthma is the most common chronic illness of childhood, with a pediatric population prevalence of 5–10% and an increasing mortality rate from 1980 to 1998 that appears to have reached a plateau (Akinbami & Schoendorf, 2002). Racial and ethnic disparities account for much of the increase in morbidity (McDaniel, Paxson, & Waldfogel, 2006). Recent studies have sought to understand the factors that affect adherence and compliance, delineate common psychosocial stresses that may act as triggers for asthma attacks, and devise psychoeducational programs, combined medical and psychological treatment strategies, and teach stress management skills to improve compliance and decrease morbidity (Bender, 2006; Hockemeyer & Smyth, 2002; Self, Chrisman, Mason, & Rumbak, 2005; Teach, Crain, Quint, Hylan, & Joseph, 2006). Hospitalization is an opportunity to emphasize education. Clear guidelines on when to call the pediatrician for appropriate timely guidance can be established along with seeking input from the family about barriers to these contacts. Triggers in the home can be addressed realistically and empathically in light of the exacerbation that led to admission. Common triggers, such as smoking and pets, require a major commitment from family members in order to change. School-related issues need to be explored from the perspective of the child (e.g., embarrassment associated with going to the school nurse) and the school (e.g., access to inhalers in the classroom). Strategies to improve parent and child anxiety and to address parent–child conflicts around compliance are valuable. Diabetes Adaptation to insulin-dependent (type 1) diabetes presents special challenges associated with the need for tight control of blood sugar, the primary role of food as a source of nurturance and soothing, the meaning to a parent of providing or limiting access to desirable foods, and the complexity of monitoring blood sugars and delivering insulin involving needlesticks and thus pain. The acute consequences of blood sugar abnormalities include symptomatic hypoglycemia, hyperglycemia and ketoacidosis and may lead to hospitalization. The long-term sequelae include effects on vision, renal function and neuropathy. Symptoms associated with hypoglycemia are often difficult for parents to differentiate from common irritability in young children or for older children to recognize as different from anxiety. This leads to either more frequent blood testing or a tendency to keep the blood sugars at a higher level than the physician would recommend. Some children have considerable anxiety about hypoglycemia, either in response to an actual episode or arising independently. It is key to treat anxiety disorders in order to improve compliance as well as recognize emerging eating disorders in the female teenage population as a factor in non-compliance (Hamilton & Daneman, 2002; Jacobson, 1996; Strauss, 1996). Parents of children with diabetes may benefit from the support of the child mental health consultant as well as parent support groups to help achieve a healthy family attitude towards eating. Concrete ways to minimize the child’s experience of being deprived of popular food treats are useful, such as having sugar-free desserts at school and at home, altering insulin to accommodate special events, and supporting the child’s understanding of how insulin helps him or her grow bigger and stronger. When patterns of conflict between parent and child around non-compliance arise (e.g., lying about foods eaten, hiding sweets and refusing blood monitoring), psychotherapeutic input should be initiated early. Family conflict is strongly related to adherence (Lewin, Heidgerken, Geffken et al., 2006). Children who enter adolescence with pre-existing parent–child conflict around health maintenance can be expected to have greater difficulty during their teenage years. Non-compliance in type 1 diabetes can be life-threatening, so the full range of psychotherapeutic, educational and family supports should be utilized. Blood testing (hemoglobin A1C) enables the pediatrician to assess the child’s compliance over an extended period and may be considered an appropriate factor for protocol-driven mental health consultation. Cancer Childhood cancer presents numerous challenges to adaptation and development, fortunately however most studies suggest that childhood cancer survivors adapt well following treatment (Kazak, 2005; Zebrack, Zevon, Turk et al., 2007). There are predictable high stress points in the course of an illness which often coincide with hospitalization including diagnosis, onset of treatment and treatment completion, as well as for some recurrence, renewed treatment and end-of-life care. Psychological support for the child and parents is particularly beneficial at these critical points. Siblings also benefit from support at the various transitions during the course of the illness (Wilkins & Woodgate, 2005). Diagnosis of a life-threatening illness is understandably frightening to parents and older children, creating a family crisis. Some children and parents respond to diagnosis and aspects of treatment by exhibiting symptoms seen in post-traumatic stress syndrome (Stuber, Kazak, Meeske, & Baraket, 1998). Frequently, children and families will face the child’s cancer diagnosis with past experiences of cancer in a family member, or close friend, coloring their understanding of what lies ahead for their child (Hoekstra-Weebers, Jaspers, Kamps, & Klip, 1999). It is helpful to invite the child to share his or her understanding of the diagnosis as an opportunity to differentiate the child’s situation from that of others, while potentially uncovering misconceptions about the illness. PEDIATRIC CONSULTATION 1151 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1151

Challenges to psychological adaptation include persistent pain, whether as a result of the cancer or of the procedures (Ljungman, Gordh, Sorensen, & Kreuger, 1999), persistent debilitating side-effects of treatment such as nausea, alteration in body image, school disruptions, compromised peer relationships, interference with ability to engage in favorite activities and conflicts in the family. Adolescents may worry about future health status, sexual function and reproductive capacities, and future career choices (Kazak, 2005; Patenaude & Kupst, 2005). Awareness of these challenges may guide the consultant in addressing concerns and adapting treatments whenever possible. During the course of cancer treatment, many children develop strong positive relationships with members of the medical team, experience a special closeness with supportive parents and maintain key pre-existing peer friendships while acquiring new friends in the hospital. Many children will report feeling a special sense of purpose for living as a result of the cancer diagnosis and most will be treated with special status as a result of the illness. Resiliency and positive life change are also part of the cancer experience (Woodgate, 1999). Organ Transplantation Liver, kidney and lung transplantation are well-established practices in the pediatric population and intestinal transplantation is beginning to be undertaken. Transplantation centers in the USA are required to include psychological assessment in order to receive accreditation. Data on criteria for approval of candidacy for transplant are vague. The serious disease process leading up to transplantation, risks of surgery, long-term medical management of organ rejection post-transplantation, threat to survival, and the vast array of medical personnel involved should place these children in the highest of highrisk populations. It is noteworthy therefore that the data on adjustment to liver and renal transplantation suggest that overall these children view themselves as healthy and competent (Karrfelt, Lindblad, Crafoord, & Berg, 2003; Mastroyannopoulou, Sclere, Baker, & Mowat, 1998; Tonquist, Van Broeck, Finkenauer et al., 1999). Not surprisingly, some children and parents are vulnerable to anxiety and experience distress post-transplant (Mintzer, Stuber, Seacord et al., 2005; Shemesh, Annunziato, Shneider et al., 2005b). It is therefore important that transplant centers involve mental health consultants and provide emotional support (Ullrich, Meyke, Haase et al., 1997; Walker, Harris, Baker, Kelly, & Houghton, 1999). Dying in Hospital The death of a child is an enormous tragedy affecting every member of the child’s family. There is no way to protect a child or family from the unique pain of the loss of a child, but sensitive care at this difficult time may serve to lessen regrets and support bereavement. Careful attention to the child’s quality of life in the last days or hours is essential. Attending to pain, anxiety and privacy/dignity needs is key. Adapting the medical setting to allow parents to nurture the dying child within the limitations of the setting or facilitating a child’s return home to die can play a significant part in the family’s experience of the death and the subsequent bereavement (American Academy of Pediatrics, 2000). The emotional impact on the medical team deserves careful attention in order to best preserve team members’ ability to continue to deliver quality care into the future. The grieving process of the staff warrants recognition. Some units have staff meetings including the child mental health consultant or other facilitator after every death or after those deaths that are most troubling to staff members, such as a patient with chronic disease, a trauma-related death or an unanticipated death. Many of the hospital-based pediatric deaths occur in neonatal ICUs or during infancy. Key to supporting the family of a dying infant is respecting the infant’s full status as a loved child. This may include facilitating religious ceremonies such as a naming or christening, creating mementos such as photographs, footprints or a lock of hair, and creating the most loving situation possible for the moment of dying such as providing a private room and allowing a parent to hold the infant at the time life support is disconnected. From age 3 years onwards, the child’s personal experience of impending death should be considered. The child should be offered developmentally appropriate opportunities to express thoughts and fears associated with dying either with words, drawings or through play. It is not uncommon for even 3- or 4-year-olds to verbalize explicit thoughts of joining dead grandparents and seeing angels, but it is also common for dying children to focus only on wanting parents with them at all times, and exhibiting a shift in behavior with more resistance to medical treatment, loss of interest in activities and food, but without any explicit verbalization of an awareness of dying. Children of all ages, but especially younger children, are likely to take their cues about whether explicit discussion of death is permissible from parents and caregivers. When parents invite this dialog it is more like to occur. When parents signal that such discussion would be unbearable, the child is likely either not to speak about dying or to talk with a medical staff member when the parent is not present. Child mental health consultants may help ready parents for discussions with their dying child. Asking the parents for observations about shifts in the child’s behavior may help the parents recognize that they would not be introducing a new frightening idea to the child in talking about death, but would rather be accompanying the child in the thoughts that he or she is already engaged in. Asking open-ended questions about worries, enquiring whether the child has questions that he or she is afraid to say aloud, or asking if he or she thinks about peers from the hospital who have died, may serve as invitations to begin the dialog. Reminding children that articulating worries does not make them happen may free some children who are worrying silently to speak. Many parents will feel more comfortable embarking on end-of-life conversations with a child if they are told that they can welcome the child’s questions warmly without having specific answers. “I am interested in your ideas.” “What got you wondering about that?” “Your good questions deserve good answers. 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about that or talk to our minister or the doctor.” These are examples of reasonable responses to a child’s existential or medical questions. In the role of child mental health consultant, one of the most useful comments in response to questions about death is to tell a child, “I don’t know what it is like to be dead, because I have never been dead. But I am always interested to hear children’s ideas about it.” Children from age 7 onward may talk about the life experiences that they will not get to enjoy. These discussions challenge a parent’s or professional’s ability to bear the sadness of facing an untimely death as well as whether to talk directly with a child about their death (Kreicbergs, Valdimarsdottir, Onelov, Henter, & Steinek, 2004). The child may talk about not getting to attend the 5th grade, never being able to drive a car or not growing up to be a doctor or a teacher. It is often the specificity of the opportunities lost in the words of a child that is so evocative. There is a sense of privilege that one experiences in listening to children as they face the end of their lives that is as special as it is sad. Often, children will talk about being tired of the fight against the disease and will look to parents for permission to give up. When the surviving family members can support each other in the painful process of letting go of the beloved child, believing that everything that could be done was done, and that further treatment would be unfair to the child, the final phase of dying seems more peaceful. In the setting of a long battle against an illness, it is easier to get to this difficult emotional state. In the setting of an acute event with little time for adjustment, or when parental discord interferes with the parents’ ability to grieve together, such peace is harder to achieve. The consultant should encourage hospital staff to follow up with parents 6 months to a year after the death of a child. Parents are appreciative when staff attend memorial services and funerals, write sympathy cards and make telephone calls (Bedell, Cadenhead, & Graboys, 2001; Macdonald, Liven, Carnevale et al., 2005). Telephone calls provide an opportunity to assess the parents’ grieving and need for referral as well as help the staff member connect with the family. Conclusions Child mental health consultants must stay attuned to the changes in the field of pediatrics. Advances in pharmacology, genomics and technology offer new hope and new challenges to psychosocial adaptation. Patterns of access to consultation will need to reflect shorter hospital stays and utilization of outpatient venues. New technology, such as telemedicine, can offer novel access to consultative expertise. Research in compliancy outcomes, efficacy and quality of life become increasingly important as the financial pressures of modern medicine force the consultant to justify the value of their work. However, many of the key features of quality consultation remain unchanged. The consultant will continue to bring to the multidisciplinary medical team the combined expertise of psychodynamic understanding, psychopharmacology, a developmental perspective on the meaning of illness, adaptation to trauma, knowledge of psychiatric conditions, behavioral interventions, and CNS influences in medical illness and as a result of medical treatment. The goal remains to answer the consultation request in a thoughtful timely fashion which respects the needs of the child, the family and the treatment team while facilitating quality of care and quality of life. References Akinbami, L. J., & Schoendorf, K. C. (2002). Trends in childhood asthma: Prevalence, health care utilization, and mortality. Pediatrics, 110, 315–322. American Academy of Child and Adolescent Psychiatry (AACAP). (in press). Practice parameter for the psychiatric assessment and management of physically ill children and adolescents. 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Knapp, P., & Harris, E. (1998). Consultation-liaison in child psychiatry: A review of the past 10 years. Journal of the American Academy of Child and Adolescent Psychiatry, 37, 139–146. Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Bjork, O., Steineck, G., & Henter, J. I. (2005). Care-related distress: A nationwide study of parents who lost their child to cancer. Journal of Clinical Oncology, 23, 9162–9171. Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Henter, J. I., & Steinek, G. (2004). Talking about death with children who have severe malignant disease. New England Journal of Medicine, 351, 1251–1253. Labay, L. E., & Walco, G. A. (2004). Brief report: Empathy and psychological adjustment in siblings of children with cancer. Journal of Pediatric Psychology, 29, 309–314. Lask, B. (1994). Paediatric liaison work. In M. Rutter, E. Taylor, & L. Hersov (Eds.), Child and adolescent psychiatry: Modern approaches (3rd edn., pp. 996–1005). Oxford: Blackwell Science. Levi, B. H., Thomas, N. J., Green, M. J., Rentmeester, C. A., & Ceneviva, G. D. (2004). Jading in the pediatric intensive care unit: Implications for healthcare providers of medically complex children. Pediatric Critical Care Medicine, 5, 275–277. Lewin, A. B., Heidgerken, A. D., Geffken, G. R., Williams, L. B., Storch, E. A., Gelfand, K. M., et al. (2006). The relation between family factors and metabolic control: The role of diabetes adherence. Journal of Pediatric Psychology, 31, 174–183. Ljungman, G., Gordh, T., Sorensen, S., & Kreuger, A. (1999). Pain in paediatric oncology: Interviews with children, adolescents and their parents. Acta Paediatrica Scandinavica, 88, 623–630. Louthrenoo, O., Sittipreechacharn, S., Thanarattanakorn, P., & Sanguansermsri, T. (2002). Psychosocial problems in children with thalassemia and their siblings. Journal of the Medical Association of Thailand, 85, 881–885. Macdonald, M. E., Liven, S., Carnevale, F. A., Rennick, J. E., Wolf, S. L., Meloche, D., et al. 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Rubin, B. K. (2004). What does it mean when a patient says, “My asthma medication is not working?”. Chest, 126, 972–981. Sawyer, M. G., Streiner, D. L., Antoniou, G., Toogood, I., & Rice, M. (1998). Influence of parental and family adjustment on the later psychological adjustment of children treated for cancer. Journal of the American Academy of Child and Adolescent Psychiatry, 37, 815–822. Schiff, W. B., Holtz, K. D., Peterson, N., & Rakusan, T. (2001). Effect of an intervention to reduce procedural pain and distress for children with HIV infection. Journal of Pediatric Psychology, 26, 417–427. Self, T. H., Chrisman, C. R., Mason, D. L., & Rumbak, M. J. (2005). Reducing emergency department visits and hospitalizations in African American and Hispanic patients with asthma: A 15-year review. Journal of Asthma, 42, 807–812. Shaw, R. J., Wamboldt, M., Bursch, B., & Stuber, M. (2006). Practice patterns in pediatric consultation-liaison psychiatry. Psychosomatics, 47, 43–49. 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Ullrich, G., Meyke, A., Haase, H., Erzfeld, C., Beckmann, S., Schmidt-Schaller, S., et al. (1997). Psychological support of children undergoing liver transplantation and their parents: a singlecentre experience. Pediatric Rehabilitation, 1, 19–24. Vance, Y., & Eiser, C. (2004). Caring for a child with cancer: A systematic review. Pediatric Blood and Cancer, 42, 249–253. Van Sciver, M., D’Angelo, E., Rappaport, L., & Woolf, A. (1995). Pediatric compliance and the roles of distinct treatment characteristics, treatment attitudes, and family stress: A preliminary report. Journal of Developmental and Behavioral Pediatrics, 16, 350–358. Wagner, J. L., Chaney, J. M., Hommel, K. A., Page, M. C., Mullins, L. L., White, M. M., et al. (2003). The influence of parental distress on child depressive symptoms in juvenile rheumatic diseases: The moderating effect of illness intrusiveness. Journal of Pediatric Psychology, 28, 453–462. Walker, A., Harris, G., Baker, A., Kelly, D., & Houghton, J. 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Wright, H., Eaton, J., Butterfield, P., Snellgrove, N., Hanna, K., & Cole, E. (1987). Financing of child psychiatry pediatric consultationliaison programs. Journal of Developmental and Behavioral Pediatrics, 8, 221–228. Young, K. D. (2005). Pediatric procedural pain. Annals of Emergency Medicine, 45, 160–171. Zebrack, B. J., Zevon, M. A., Turk, N., Nagarajan, R., Whitton, J., Robison, L. L., et al. (2007). Psychological distress in long-term survivors of solid tumors diagnosed in childhood: A report from the childhood cancer survivor study. Pediatric Blood and Cancer, 49, 47–51. PEDIATRIC CONSULTATION 1155 9781405145497_4_070.qxd 29/03/2008 03:00 PM Page 1155

1156 Only a handful of countries have an articulated national policy in relation to services for children and young people with mental health problems. Of 191 countries sampled in 2003, 14 (7%) had produced policy in this area (World Health Organization [WHO], 2005). The vision for the future is that it will become possible to agree a clear and coherent approach to service provision, based on a growing evidence base, underpinned by a comprehensive assessment of need and in line with the core values and priorities of a given society. This chapter offers an approach to thinking about the organization of services across a range of contexts. It will not attempt to put forward one ideal model to fit all, nor attempt a comprehensive review of existing models of provision,2 but will try to develop a systematic way of considering the different aspects of service organization, trying to take into consideration some of the different factors that may present particular challenges in different countries. The topic is examined in terms of the following five key domains, which are taken to represent crucial building blocks for thinking about service organization: 1 Responding to need; 2 Understanding the evidence base; 3 Developing a workforce; 4 Ensuring accessibility; and 5 Assuring quality. Responding to Need The issues of what counts as a “mental health problem” and whose needs should be the legitimate focus of service provision are far from settled. Clearly, there should be provision for children with diagnosable mental health problems that are causing a significant degree of impairment where there are effective treatments, but beyond that there is much room for debate (for an important but controversial discussion of these issues in relation to services in England see Goodman, 1997). An ever-expanding conceptualization of what constitutes children’s “mental health needs” has rendered the concept of children’s “mental health problems” increasingly open to interpretation. At least four groups of children with “mental health needs” are routinely referred to in the discussions about developing national policy: 1 Children and young people in difficult (and often terrible) circumstances; 2 Children at risk of developing diagnosable mental health problems; 3 Children with diagnosable mental health problems; and 4 Children with levels of impairment resulting from mental health issues that make it difficult for them to function within their community or culture. These groups of children are sometimes discussed (Remschmidt, Belfer, & Goodyer, 2004) as if they exist in the relation to each other shown in Fig. 71.1. In fact, it may be more appropriate Organization of Services for Children and Adolescents with Mental Health Problems Miranda Wolpert 71 1 For brevity from now on the terms “children” and “child” will be used to refer to “children and young people.” 2 For an excellent source book on provision across the world see Remschmidt, Belfer and Goodyer (Eds.). (2004). Facilitating Pathways: Care treatment and prevention in child and adolescent mental health. Berlin: Springer. Fig. 71.1 Relationship of groups of children with mental health needs. Children with significant levels of impairment Children with diagnosable mental health problems Children at risk of developing diagnosable mental health problems Children in difficult circumstances 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1156 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

to think of these four groups as highly overlapping but potentially distinct populations of children (Fig. 71.2). Lack of clarity when discussing the needs of the different groups can obscure the fact that different groups may be a priority for different communities and lead to misunderstandings between service developers when discussing their common commitment to services based on “needs assessment.” Children in Difficult Circumstances Definitions of “difficult circumstances” vary with national context. The estimated 14 million AIDS orphans (concentrated largely in Africa) would fall into this category, as would the 12 million children in the USA living below the poverty line, along with all those children who are in contexts of war, famine or abuse (WHO, 2005). Although child mental health services are unlikely to be the main provider for the majority, this group is likely to include those children with high and complex mental health needs who are the hardest to reach and who are an increasing policy priority in many countries (Belfer, 2004). However, it may also include children who do not have specific mental health needs (Robertson, Mandlhate, Seif El Din, & Seck, 2004). Determining the most pressing needs of these children and determining the most effective contribution of mental health provision within this group are likely to be key tasks in terms of service organization. Children “At Risk” Risk factors for developing diagnosable mental health problems include some aspect of difficult circumstances (e.g., violent environments, lack of warm family environments) but risk is also heightened by other individual and interpersonal factors such as brain injury, low birth weight, poor parental mental health, low IQ, irritable temperament, family dysfunction and the lack of a key supportive relationship with an adult (Goodman & Scott, 2005). For children identified as “at risk,” the focus for mental health provision is likely to be on how to enhance resilience. There may be key opportunities for intervention, such as when the child is born or at key transition points (e.g., starting school, changing school, leaving school). There is an argument for targeting particular groups such as children of parents with mental health problems (Falkov, Phillips, Brady, Stathis, & Finney, 2003). However, promotion of resilience may best be achieved by agencies other than child mental health specialists, such as welfare sectors creating greater neighborhood cohesion, perinatal services reducing risk of low birth weight and educational services implementing appropriate programs to promote emotional well-being and support children in times of stress. Children with Diagnosable Mental Health Problems Epidemiological data from Europe and the USA suggest that around 10–20% of children have diagnosable mental health problems (using ICD-10 or DSM-IV criteria; Goodman & Scott, 2005). There are indications of differences between countries, with slightly lower rates found in India and Norway, for example (Heiervang, Stormark, Lundervold et al., 2007; Malhotra, Kohli, & Arun, 2002), and slightly higher in Brazil, Bangladesh and Russia (Fleitlich-Bilyk & Goodman, 2004; Mullick & Goodman, 2005). There is a need both for more international epidemiological data and for greater international consensus on some broad definitions of difficulties which would allow a common language to develop that could underpin appropriate policy development (Belfer, 2004). Some diagnosable mental health problems in children may get better without intervention (such as depression in mild forms), suggesting it may be counterproductive to rush to provide services for all diagnosable difficulties in all circumstances. For these reasons, amongst others (in particular the fact that not all current treatments are proven to do more good than harm; see p. 1160), it may be unwise to go down the route recently suggested by the American Psychiatric Association of screening all children in schools and treating all diagnosable difficulties (American Psychiatric Association [APA], 2002). Children with Impairment Caused by Mental Health Difficulties This category covers children with a wide range of difficulties ranging from enuresis to psychosis, including those with chronic and multiple difficulties and those with discrete and defined difficulties. It includes those with difficulties where there are known to be effective interventions and those presenting with problems where the best course of action is much less clear. It may also include some children who do not meet the diagnostic criteria but still have significant impairment. Angold, Messer, Strangl et al. (1998) found that 50% of children attending one US clinic did not meet diagnostic criteria, but half of these were significantly functionally impaired. The impact of significant and impairing mental health difficulties, if not effectively treated, can be substantial. Worldwide, ORGANIZATION OF SERVICES 1157 Fig. 71.2 Alternative view of groups of children with mental health needs as highly overlapping but distinct groups. MH, mental health. Children with MH problems Children at risk of MH problems Chi dl ren ni difficult circumstances Children with significant mi pai mr e t n 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1157

suicide is the third leading cause of death amongst adolescents; major depressive disorder, often starting in adolescence, is associated with substantial psychosocial impairment; conduct disorders amongst children tend to persist into adult life and are reflected in later drug abuse, antisocial behavior and poor physical health (Broidy, Nagin, Tremblay et al., 2003). Attempts to calculate the cost to society of unresolved difficulties are still in their infancy (Romeo, Byford, & Knapp, 2006), but some figures are being estimated. The additional public expenditure on a child with conduct disorder over a 7-year period in the USA was estimated to exceed $70,000, largely in costs related to criminal behavior (Foster & Jones, 2005). Access to Provision Since Rutter’s seminal work in this area in the UK in the 1970s, suggesting only 1 in 10 children identified with problems warranting specialist intervention actually accessed services, further studies have suggested that it has remained the case that the majority of children and young people with significant mental health needs do not reach services (Ford, Hamilton, Goodman, & Meltzer, 2005; Green, McGinnity, Meltzer, Ford, & Goodman, 2005; Rutter, Tizard, & Whitmore, 1970). In the developing world, access to specialist services is likely to be far more limited and for those children also in difficult circumstances access is likely to be even harder. Access is limited not just by levels of resources available, but also in many countries by alternative beliefs about the best way to understand and treat problems and the stigma associated with seeking specialist “mental health” help (Eapen & Ghubash, 2004; Nikapota, 2002). Prioritizing Needs Each community will have to determine its own way to resolve the tension between the needs of these different groups. In some countries this may make independent child mental health provision an unaffordable luxury when pitted against other basic needs (Robertson, Mandlhate, Seif El Din et al., 2004). Where some resources are available, then the country will need to balance the desire to put resources into mental health promotion and prevention of mental ill health (to meet the needs of the first two groups above) with the need to ensure that adequate resources are available to provide services for the most impaired and troubled children (the latter two groups above). While there is as yet no easy metric to determine what the ratio should be, the World Health Organization suggested that where resources are particularly limited, priority for funds for child mental health provision should be given to those children with existing difficulties that occur frequently (and/or have highest cost implications); cause a high degree of impairment and the greatest long-term care/cost consequences; have an evidence base for treatment; and (particularly in those countries with the most limited resources) where the difficulties can be dealt with in primary care or universal services such as schools or GPs (WHO, 2003). In such circumstances, the best that can be suggested for promotion is to encourage positive activity in terms of universal service provision that does not require additional resource allocation. In countries with greater resources, there is more opportunity to support a range of provision. In such countries, child mental health professionals’ input can be conceptualized as being provided at universal, targeted and specialist levels. This involves supporting and working alongside universal provision to promote emotional well-being whether in schools or via primary care health workers. Targeted provision aims to promote emotional well-being in those deemed either at most risk (group 2 above) or in most need (group 1 above), with the groups being determined by policy imperatives. Here, specialist mental health professionals will work alongside workers from other sectors who take a lead in relation to the needs of these groups as a whole, such as social welfare workers and primary care staff. Specialist provision aims to support group 4 above, and can be provided at a local community level, although more rare and specialized resources may be provided at a regional or even a national level. In planning response to “need,” however, it is important to consider the potential negative and even harmful impact of increased specialist mental health services. Mental health professionals are frequently in danger of assuming that more specialist mental health provision is unquestionably an unalloyed good. The need for more provision must be set in the context of other (sometimes competing) “needs,” such as the primary need of children to be nourished, sheltered and protected; their need not to be stigmatized or miss education; and their need not to receive inappropriate, ineffective or harmful treatment. At times, an inappropriate mental health focus can be an unhelpful drain on resources (Shooter, 2005). One documented example is when well-meaning voluntary groups enter a country following a disaster to provide “interventions for post-traumatic stress disorder (PTSD)” that were not linked to other relief efforts and actually interfered with and undermined key initiatives (WHO, 2005). While the costs of not providing effective specialist mental health inputs can be high, it is important to remember there are also costs to providing unhelpful services. Understanding the Evidence Base The arguments for trying to promote evidence-based service development are compelling. Natural biases in reasoning mean that people tend to make decisions based more on things that fit their assumptive world view than those that challenge it and are more influenced by the charisma of those promoting a particular approach than by evidence for its effectiveness (Garb, 1997; Kahnemann, Slovix, & Tvmersky, 1982). When the evidence base is not used as the basis for service development, it makes it more likely that seemingly plausible but ineffective and/or harmful interventions may be introduced or continued and that new interventions that have been shown to do more good than harm may never be introduced (Muir Gray, 2001). CHAPTER 71 1158 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1158

As yet, few services have been developed on the basis of considered evidence. This may in part be because of a lack of effective dissemination of evidence and a lack of effective means of supporting implementation (Woolgar & Scott, 2005). However, a major limiting factor remains the sheer lack of relevant evidence, and the difficulties of agreeing the meaning of what is there, despite huge strides in recent years. The short-comings of the evidence base in relation to child mental health interventions generally will not be analyzed in detail here – an overview can be found elsewhere (Fonagy, Target, Cottrell, Jeanette, & Kurtz, 2002) – but five key areas of limitation of particular relevance when looking to the evidence base to underpin service development should be highlighted. The first, most obvious, problem is the sheer paucity of highquality research. Even in the most extensively researched area in relation to child mental health service provision (exploring which interventions work in controlled conditions) studies are limited. There is even more limited research activity in relation to key questions about service design itself. This partly reflects the difficulty of designing studies that are rigorous, feasible and meaningful in this area. The second key limitation is that the vast majority of servicerelated research so far conducted has been produced in the West, and the majority of this in the USA. The question is how far these findings can be generalized to other contexts, particularly those with very different cultural backgrounds and traditions (Hackett & Hackett, 1999). The third key limitation is the lack of agreement as to appropriate outcomes to use to evaluate services. There is an emerging appreciation of the need to look at outcomes from a range of perspectives and across a range of domains (Kazdin & Kendall, 1998; Wolpert, Bartholomew, Domb et al., 2005a). However, there is as yet no consensus as to how to weigh the different outcomes that might arise from these different perspectives or across different domains. Thus, there is no agreement as to which type of outcome should be regarded as most important (e.g., change in symptoms, social adaptation, experience of care, or some other dimension) nor whose view should be prioritized where views differ (e.g., child, parent, practitioner or others). The issue of how to make valid comparisons across studies where different outcomes have been used is yet to be resolved (Weisz, Chu, & Polo, 2004). Fourthly, there is inevitably a complex interaction between the emerging evidence base and the political priorities and preoccupations within a given country, both in terms of which topics are funded to be explored and in terms of the credence given to any findings that emerge. The pressure to implement a favored policy before it has been formally evaluated can mean that attempts to establish meaningful evaluation may be compromised (Rutter, 2006). Finally, the way research is funded and the resources available for this from different groups may also crucially shape the nature of the “evidence” available. The financial resources available to pharmaceutical companies, for example, mean that disproportionately large amounts of research are carried out on “drug trials” as opposed to comparing different forms of psychological intervention. Bearing these limitations in mind, the evidence will be considered in terms of how far it can contribute to answering two key questions: 1 “What interventions should be prioritized?” 2 “What organizational structures should be prioritized?” What Interventions Should be Prioritized? Attempts are starting to be made to summarize the existing evidence base to make it more accessible to practitioners and service developers. Table 71.1 offers an attempt to summarize some of the key findings in relation to interventions for children with diagnosable difficulties drawn from Goodman & Scott (2005) and Wolpert, Fuggle, Cottrell et al. (2006).3 The implications for service design might at first sight appear to be straightforward: that the interventions in the left-hand column of Table 71.1 should definitely be offered, those in the middle column should be at least considered and those in the right-hand column should be discontinued. However, caution must be exercised. No matter how rigorous the process used, any attempt at summary of the evidence will inevitably involve delicate judgments in determining what conclusions it may be appropriate to draw from existing studies. As alluded to above, much current research is flawed and limited. Any summary will need revision in the light of new evidence as it emerges. Moreover, even for the most welldesigned studies, the evidence for the applicability of research findings to other contexts remains mixed. Research that looks at the impact of services using routine clinical practice, even where that could be anticipated to be relatively independent of context (such as when medication is prescribed), generally find lower effectiveness than is indicated in the studies informing Table 71.1 (MTA Co-operative Group, 1999; Weisz, Donenberg, Han, & Weiss, 1995). This difference may be because of differences in the populations of children seen, types of interventions made and/or outcomes assessed (Kendall & Southam-Gerow, 1995). Outcome-focused intervention studies are generally conducted with controlled groups of children in academic settings, so the relevance of any findings for children from different cultural backgrounds with complex overlapping difficulties needs to be established (Murray, Fayyad, Jensen et al., 2006); moreover, the role of non-specific factors such as therapeutic engagement, expectations of change and therapist warmth may need to be taken into account (Jensen, Weersing, Hoagwood, & Goldman, 2005). It is hoped that as the evidence base develops so too should the sophistication with which it might be interrogated. For every intervention listed as having “good evidence” to support it, the following questions should be asked (modified from Kazdin, 2004, p. 113): 1 What are the costs, risks and benefits of this intervention relative to no intervention? 2 What are the costs, risks and benefits of this intervention relative to other interventions? ORGANIZATION OF SERVICES 1159 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1159

3 What are the key components that appear to contribute to positive outcomes? 4 What parameters can be varied to improve outcomes (e.g., including addition of other interventions, non-specific clinical skills)? 5 To what extent are effects of interventions generalizable across: (i) problem areas; (ii) settings; (iii) populations of children; and (iv) other relevant domains? We are a long way from being able to answer these questions in relation to the majority of interventions in child mental health. It is likely that more sophisticated models are going to need to be developed to allow such analysis. Current metrics available to compare financial costs and benefits for example include quality adjusted life years (QALYs) and disability adjusted life years (DALYs). These are based on adult populations and are thought to dramatically under-represent burden related to conditions such as attention deficit/hyperactivity disorder (ADHD), conduct disorders and learning disorders (Remschmidt, Belfer, & Goodyer, 2004). Weighing mental health promotion initiatives against interventions for those with existing impairments may require particularly careful analysis. The evidence base for prevention and promotion programs is discussed in depth elsewhere in this volume, but it would appear that while there is evidence that such programs may promote emotional well-being (Barnes, 1998), research to date has not proved that this will reduce levels of significant disturbance and thus impact on specialist services, nor that such programs are necessarily the most effective approach (Harrington & Clark, 1998; McLellan, MacMillan, & Jamieson, 2004). Similarly, the evidence base for in-patient provision is unclear (Offord, 2005). Examples of well-researched alternatives to in-patient care are now emerging that suggest viable opportunities for effective treatment for even the most disturbed and disturbing groups without the need for hospitalization (Hewson, 2002). However, it should be noted that these are not necessarily any cheaper than in-patient provision (Baruch & Cannon, 2006). One clear inference that can be drawn from current evidence is that it makes sense to start by decommissioning ineffective interventions. Unstructured work for conduct disordered young people is still prevalent despite evidence of its ineffectiveness and even potentially harmful effects. More effort should perhaps go into stopping unhelpful interventions than currently. What Organizational Structures Should be Prioritized? The Fort Bragg study (and the subsequent Stark County study) conducted by Bickman et al. in the USA (in 1995 and 1999, respectively) perhaps warrants particular attention as it generated such high levels of interest and controversy. This study evaluated a large-scale system change project designed to improve outcomes by providing an unrestricted set of coordinated inputs from a range of services. Results were compared with other sites using traditional services. Information was collected on service use, cost, satisfaction, clinical and functional data over the course of the 3-year study and at follow-up since. CHAPTER 71 1160 Table 71.1 Selected evidence-based examples. (After Wolpert et al., 2006 and Goodman & Scott, 2005.) Mental health problem Disturbances of Attention and Activity Disturbances of Conduct Deliberate Self Harm Substance abuse Interventions with evidence of no effect or harmful Cognitive Therapy Large group therapy Unfocused therapy General education based prevention programmes in schools Family psycho-education Unstructured family support groups Interventions with some evidence Behaviour therapy used alongside parent training Family therapy including focused behavioral advice Focused group therapy for those who have harmed several times Family therapy focused on solving key problem areas Multi-systemic therapy where there are multiple problems Motivational interviewing Interventions with good evidence Stimulant drugs Atomoxetine Parent training for under 10s where the difficulties are not too severe Parent training combined with problem solving/social skills training for 8–12 year olds Multi-systemic therapy or therapeutic foster care for those with severe long term difficulties Family therapy focused on changing behaviours 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1160

The study found greater access and increased rates of satisfaction and less use of in-patient services, but no differences in behavioral–emotional functioning overall and the cost was much greater at Fort Bragg. The subsequent Stark County study also found that a multiagency system for care led to no significant difference in clinical outcomes when compared with routine services (Bickman, Summerfelt, Firth, & Douglas, 1997). Bickman, Lambert, Andrade et al. (2000) concluded: “The current national policy of large investments in systems of care infrastructure is unlikely to affect children in the manner intended . . . we need to focus on the services or treatments themselves to improve outcomes” (Bickman, Lambert, Andrade, & Penaloza, 2000). This conclusion has been hotly contested. Flaws in the study design, implementation and interpretation have been pointed out (Friedman & Burns, 1996; Mordock, 1997; Saxe & Cross, 1997). It was argued that services were overwhelmed in the early months and provided less effective interventions, that the researchers failed to take account of some of the positive outcomes on some of the measures used and so on. It has been suggested that there is evidence that “wraparound services” (whereby a range of services are provided in a coordinated fashion to children and families based on their needs and not those of the services) do produce better outcomes and that the poor results above may have been a result of lack of fidelity to this model (Bruns, Burchard, Suter, & Force, 2005). There is some evidence that shared understandings at the highest level and pooled budgets seem to be crucial to positive multiagency collaboration (Robinson, Anning, Cottrell, Frost, & Green, 2004). “MHSPY” in the USA is an initiative that involves five public and two private agencies that have come together with blended funding to provide a coordinated approach to focus on a group of “at risk” and ill children and where outcomes look positive, although lacking a control group or clear cost-effectiveness data as yet (Grimes, 2004). It can be hypothesized on the basis of the current evidence that integral to creating joined up services may be the ability for state departments, or their equivalent, to agree joined up policy (rather than diverting resources into costly service reorganization). Thus, clear and shared agreements about protocols around information sharing, prioritized outcomes and agreed child protection arrangements are crucial, although often sadly lacking. The indications are that a key aspect is continuity of intent, reflected in a “shared mission through both administrative and clinical aspects of the system” (Grimes, 2004, p. 38). There is little evidence available currently to guide service developers as to the best way to structure services in relation to a number of other key issues, such as what age group of children should be seen by different services; is it best to structure services around particular problems or around different age groups? In the light of lack of evidence and the fact that whichever way services are organized boundary issues arise, whether across age groups or specialisms, it may make sense to see the onus as being on service providers and developers to ensure that they work meaningfully across divisions rather than trying to create an ideal service structure. It may be hypothesized that, here too, non-specific factors are likely to be relevant. Thus, strength of the commitment of service providers to a particular shape of service and the ability of key individuals to collaborate across whatever boundaries are inevitably created, may impact as much, if not more, than the specifics of different forms of service structure. Building a Workforce The international literature has traditionally discussed child mental health workforce issues largely in relation to numbers of child psychiatrists. This may reflect the fact that in many countries, such as those in Europe, systems of care often developed in close conjunction with adolescent and child psychiatry as a speciality and as part of the health sector. However, increasingly research and policy highlight the importance of the input of a range of possible groups in relation to child mental health provision (Hansen, Litzelman, Marsh, & Milspaw, 2004; Homonoff & Maltz, 1991). Schools are recognized as perhaps the most influential place in relation to help seeking and efforts are being put into training education staff to recognize and work with mental health difficulties (Remschmidt, Belfer, & Goodyer, 2004). Some promotion programs in schools are showing positive results in terms of emotional well-being and academic performance, such as the international FRIENDs program and the Roots of Empathy in Canada (Weare & Markham, 2005; Wyn, Cahill, Holdsworth, Rowling, & Carson, 2000). However, care must be taken not to overload schools and there is likely to remain a need for more specialist and health-focused provision for some children. Pediatricians often work with some of the most difficult and complex children with a range of behavioral and psychological needs, particularly in the younger age range. In some European countries, such as Austria, Finland and Germany, links between pediatrics and child mental health services are particularly strong (Rydelius, 2004). Other health workers, such as health visitors in the UK who work as part of the primary care system working with mothers and babies in the early months and years, and primary care workers in India, have been found to have a positive impact as part of mental health initiatives (Davis & Spurr, 1998; Nikapota, 2002). In the developing world, the ability to engage a workforce that also links with relevant belief systems of the community, such as traditional healers, ayurvedic treatment and yoga, may be crucial and the use of extended networks of informal and formal sources of support can be of great benefit (Robertson, Mandlhate, Seif El Din et al., 2004; Thara, Padmavati, & Srinivasan, 2004). There have been a number of attempts to agree a common framework for assessing and understanding difficulties across different sectors. Some specialist assessment tools have been developed, such as the Child and Adolescent Psychiatry Assessment (CAPA; Angold & Costello, 2000) and the Development and Wellbeing Assessment (DAWBA), which can be filled in ORGANIZATION OF SERVICES 1161 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1161

over the Internet (Goodman, Ford, Simmons, Gatward, & Meltzer, 2003). However, national consensus as to the key items of information to collect has been hampered by professional disagreement about the appropriate conceptual model and approach to adopt. It is hoped that a consensus view of typology emerges that will allow enough agreement in the future for a common assessment approach to be used across child mental health. In terms of the key staff to provide specialist mental health provision, while there is much assertion and rhetoric there is in fact very little hard evidence as to what form an ideal workforce should take, although some attempts are now being developed to model extent of need for specialist staff based on calculations of the amount and types of input required for particular difficulties (Goodman, 1997; Kelvin, 2005). Traditionally, training of specialists in relation to mental health, on top of any core professional training, has been undertaken according to theoretical models. Thus, people are trained in “family therapy,” “play therapy,” “psychodynamic psychotherapy,” “cognitive–behavioral therapy” and “group therapy” to name a few. This has meant that when people come to practice they often come with an allegiance to a particular theoretical model and belief system. It is perhaps not too fanciful to speculate that what is called for is a different sort of specialist training, built not around allegiance to models of therapy but founded instead on a commitment to act on the best available research and evidence base, drawing on a range of models and approaches, as appropriate, and an ability to review options in the light of emerging evidence. This is perhaps starting to emerge in some countries as training for new members of the workforce – variously termed generic child and adolescent mental health workers – is starting to be developed. This initiative might usefully be advanced by specific training for support staff to become expert in particular evidence-based interventions such as specialized providers of parent training. Even allowing for any shifts in training approach, the accepted wisdom is that multiprofessional teams and multiagency working will remain the way forward (Department of Health, 2004; Stroul & Friedman, 1986). The idea is that complex problems need the combined expertise of specialists which can best be provided as part of a team and that by bringing different agencies together the necessity for individual children and families to negotiate their way through a variety of systems is reduced. However, these assumptions remain largely unproven. The amount of time necessary to promote effective team building and the degree of anxiety that can be created between team members in clarifying their different roles and responsibilities may use up precious resources and reduce capacity to carry out direct clinical work. More empirical research in this area is needed. In most countries, specialist mental health professionals are perceived as a scarce resource. Figures are generally quoted for psychiatrists. Worldwide, the availability of psychiatrists varies from 1:5300 in Switzerland to 1:1 million in China and even greater ratios in parts of the developing world. Sometimes, lack of psychiatric provision is more a result of inadequate distribution of resources, with psychiatrists working mainly in academic institutions in large urban centers. This appears to be the case in parts of South America (Rohde, Celia, & Berganza, 2004). Figures for other professional groups are harder to come by but it is likely that similar issues pertain. Staff shortages, particularly in the developing world, are exacerbated by the brain drain – there are more Indian psychiatrists working in the USA than in India (WHO, 2005). In those countries where key professionals are an expensive and limited resource, policy seeks to ensure more equitable distribution of specialists and/or adopt a cascade approach whereby most senior mental health professionals spend most time in consulting and training others, such as in Bosnia (Shooter, 2005). This can be achieved via a range of means such as telephone or video links (Pesämaa, Ebeling, Kuusimäki et al., 2004). Where resources are in particularly short supply, opportunities can be explored for mental health provision to piggyback on other sectors with more provision, such as HIV programs in Africa (Robertson, Mandlhate, Seif El Din et al., 2004). Models of very rapid professional training for primary care staff and training of traditional healers or educational support personnel have been promoted as attempts to improve mental health provision where specialist input is lacking (Robertson, Mandlhate, Seif El Din et al., 2004). However, research highlighting the importance of fidelity to model in terms of efficacy of interventions indicates that there may be a necessary threshold of amount of training combined with ongoing organizational support for subsequent interventions to be effective (Scott, 2004). Even in the industrialized West it may be relevant to look to develop new workforces to extend capacity, such as by the use of support staff, technicians and volunteers. Models of encouraging family members to train as key workers are now being piloted in a range of contexts worldwide (US Department of Health and Human Services, 1999). Ensuring Accessibility Promoting Accessibility via Service Location Wherever child mental health provision is located (either geographically or in terms of overarching management systems) boundary issues arise. Thus, age cut-offs, balance between regional and local provision and whether child mental health provision is located mainly within children’s services generally or as primarily linked to adult mental health, vary across countries. In parts of Europe – such as Switzerland and Hungary – and in Egypt, child mental health services are primarily organized under the auspices of education. This has many advantages for younger children in terms of reducing stigma and increasing accessibility, but can increase difficulties of coordination for older adolescents and those with more severe mental illness. Countries have dealt with boundary issues in a variety of ways. In Australia and New Zealand, there is CHAPTER 71 1162 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1162

a deliberate 2-year overlap between youth and adult mental health service provision to try to help encourage flexibility for young people in this transitional age group (18–20 years; Hazell, 2005). In Finland, in-patient units for under-11-yearolds are located wherever possible nearer pediatric resources and those for adolescents nearer adult mental health provision (Piha & Almqvist, 1999). There is increased attention internationally to the need for services to be meaningfully linked across a range of sectors including the criminal justice system, substance abuse services and religious networks (Belfer, 2004). Promoting Accessibility for the “Hard to Reach” There is an increasing preoccupation with how to ensure that the most marginalized groups or communities in a given society can access services. As discussed above, attempts to make provision more accessible as well as less stigmatizing to these groups can include use of education and primary care workers, community and religious leaders, and family networks. The work of voluntary organizations can be a source of innovation and energy, and communities need to find ways for statutory services to learn from them. For example, the walk-in community center Empilwent, South Africa, pioneered a more accessible drop-in approach (WHO, 2005). There is currently a call for services to become more culturally competent, and widespread consensus on this aim, but it is unclear as yet what a culturally competent service would be like. Although there is a welter of innovative attempts to make services more culturally sensitive and appropriate, the evidence of the long-term impact of these initiatives is as yet limited (Nikapota, 2002). Promoting Geographical Accessibility It could be argued that child mental health services have been slow on the whole to “get out of the clinic” and in particular to embrace the impact of new technologies that might increase access. However, some interesting innovations are developing. These range from mobile services, such as the peripatetic child mental health team which travels across Germany providing, amongst other things, follow-up on previously hospitalized young people (Remschmidt, Belfer, & Goodyer, 2004) to increased use of telephone, Internet and text contact generally. Telephone helplines such as KidsHelp in Australia, Childline and YoungMinds Parent Information Service in the UK are run by charities independent of statutory provision but it may be that greater links can be made between such resources and more traditional services in the future. Telefono Azzuro, Italy, shows the way these can be combined with other provision (Caffo, Forresi, Belaise et al., 2004). A range of websites have been developed by and for young people, some of which allow for discussions between young people, and others offer access to specialist advice and support (e.g., ru-ok.com). The use of emails and text messaging to communicate between professionals and young people is now increasing, as is the use of IT aids to assessment and treatment. The pace of innovation in this area is likely to accelerate sharply in the future. Assuring Quality Whatever organizational structures a society adopts and whatever workforce is in place to provide services, systems need to be put in place to ensure quality of provision, promote best practice and allow for change in practice in the light of increased knowledge and future policy imperatives. A key dilemma for policy-makers is how to get the right balance between centralized and devolved decision-making in relation to service development. Too great an attempt to control all aspects of service organization from a national center is likely to lead to unwieldy bureaucratic decision-making, while too much devolution to local decision-making can lead to huge variations in type and quality of services. There is no clear solution to this tension. One approach is to try to ensure that, where decisions are devolved to agreed geographical units (accountable to local populations), those charged with decision-making have the necessary skills and resources to enable them to plan and develop services in line with best evidence, in line with national guidance, and are able to implement effective performance management arrangements. One mechanism of quality assurance is to set standards to ensure that key activities are undertaken. Services may then be evaluated by inspectors to ensure compliance and a variety of incentives and penalties can be applied. However, real problems are presented by the danger of perverse incentives, as activity can easily become skewed. In an effort to meet waitlist targets, for example, other crucial activities may be neglected. National (and international) guidelines can be used to shape practice. Different countries have developed systems to sift the evidence and pull together consensus statements to guide and inform practice (e.g., National Institute of Clinical Excellence in England, American Psychiatric Association Practice parameters in the USA). The danger remains of overprescription on a very narrow evidence base and the possibility that the implementation of poorly understood guidance may be every bit as distorting as inappropriate targets. Some countries have sought to overcome this by stressing that guidance is advisory only. For example, in New South Wales, Australia, model care packages for adolescents with severe problems are outlined. These include one 90-min family-orientated mental health assessment and six 45-min family-orientated community contacts. The aim is to inform service planning, not prescribe or proscribe clinical work (Hazell, 2005). Some of the most successful initiatives involve collaborations between service providers to promote best practice and disseminate and share information. Organizations such as the International Association for Child and Adolescent Psychiatry and Allied Professionals (IACAPAP) have done much to promote sharing of the latest research, and more formal peer review groups have also been established whereby members agree standards and undertake peer monitoring and evaluation, such as the Quality Network for Inpatient Care in the UK (Royal College of Psychiatrists: College Research and Training Unit). It is increasingly recognized that for tacit complex knowledge, as is likely to underpin best practice in child mental health, ORGANIZATION OF SERVICES 1163 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1163

having face-to-face meetings and encouraging learning collaborations are likely to be more effective than circulating written information alone (Office for Public Management, 2000). A number of countries distribute awards for best practice in child mental health – although the impact of these on quality is as yet unknown. In order to ensure that child mental health services develop into self-reflective and learning organizations, allowing for future development and innovation, providers must have feedback about their current outcomes. This requires functioning IT systems and a core dataset (Tingay & Stein, 2004; Wolpert, Thompson, & Tingay, 2005b), but even in the most developed countries, the promise of coherent IT systems remains more a hope than a reality. It is key that IT systems are developed that are capable of supporting decision-making by providing easy access to information for practitioners so that they can obtain feedback on their work and learn accordingly. While in no country in the world are there data systematically gathered for the assessment of child and adolescent mental health service outcomes at a national level, some encouraging national and international collaborations are emerging. The CAMHS Outcome Research Consortium (CORC; chaired by the author) is a collaboration between over half of all services across the UK who are implementing an agreed model of routine outcome and have agreed ways to present the data in order to inform service providers and users and to help inform service developments (Wolpert, Bartholomew, Domb et al., 2005a). The approach has parallels with that being employed in the USA (Ohio; Brower, 2003). In all cases, a small suite of measures is completed by service users and providers at initial contact and at some time later. There is an increasing policy emphasis on the need for service users to inform service development priorities and to be part of any evaluation of services. Some innovative models have been tried, such as in Ohio, which has created outcome systems from a service user perspective, and in parts of the UK where young people are trained as service evaluators (“Investing in Children”, Durham County Council, UK), although, once again, the impact of these on quality of services is yet to be researched. There are also increasing attempts to inform service users about different options so that they can make informed choices. For example, the current author and colleagues have recently produced a small booklet which sets out to summarize the evidence base for different interventions for children and young people – this is freely available from [email protected]/ebpu (Wolpert, Goodman, Raby et al., 2007). Conclusions There is no one ideal model for organizing services, but some key themes can be highlighted. It is helpful to start with an analysis of the range of anticipated needs, and to seek clarity at a policy level as to the current priorities for a given community. Where resources are limited, specialist mental health provision should be targeted foremost on those with greatest levels of impairment for whom there are available effective interventions. Implementation of effective models of prevention and promotion should be supported in so far as resources allow, but in the light of the current limited evidence base and likely resource constraints, providing treatment for people with existing difficulties should be seen as the highest priority. It is anticipated that the evidence base will grow and that while it is likely to continue to generate as many questions as answers, the emerging findings may increasingly guide practice, particularly in relation to decommissioning ineffective or harmful strategies. Signs of a shift in the professional culture for child mental health specialists have been noted, as they start to adopt a more evidence-based and an outcomes-focused world view and move away from firm allegiance to theoretical beliefbased models. The range of innovative models of services, making increasingly good use of the new technologies and supported by increasingly mature collaborations and networks, may aid further the development of reflective, high-quality and accessible provision. Tension is likely to remain, however, between allowing for child mental heath specialists’ creativity and innovation on the one hand and the increasing emphasis on the importance of fidelity to model and shared arrangements around initial assessments and outcomes on the other. How this tension is played out over the coming years may well determine the future shape of services for some time to come. 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Atlas: Child and adolescent mental health resources. Global concerns: Implications for the future. Geneva: World Health Organization. Wyn, J., Cahill, H., Holdsworth, R., Rowling, L., & Carson, S. (2000). MindMatters: A whole-school approach promoting mental health and wellbeing. Australian and New Zealand Journal of Psychiatry, 34, 594–601. YoungMinds. (2006). Emerging practice: Examples of services for the 16–25 year age group. London: YoungMinds. YoungMinds’ Parents Information Service. Accessed from http:// www.youngminds.org.uk/parents 2 January 2008. CHAPTER 71 1166 9781405145497_4_071.qxd 29/03/2008 03:00 PM Page 1166

Primary care is the first point of contact for families seeking professional attention for health problems. It aims to clarify demand, diagnose disorder, offer information, advice, treatment and rehabilitation and coordinate care with other disciplines and sectors over time (Boerma, 2006). The relevance of primary health care to mental health has been highlighted, with emphasis on the need to enhance its central role and to build capacity, to reduce the global burden of suffering and impairment from mental and behavioral disorder (WHO, 2001, 2005). It offers scope for prevention and early intervention. The role within child and adolescent mental health has been less well documented but evidence is slowly accumulating, much of it from developed countries. The chapter begins by describing different models of pediatric primary care service delivery. The relevance for child and adolescent mental health is then discussed in relation to the core roles of primary care. The mental health research literature on different age ranges (preschoolers, school-aged children and adolescents) and important disorders (depression, somatization, attention deficit/hyperactivity disorder [ADHD], behavioral problems) is considered as it pertains to the core primary care roles. Finally, the need and means for expanding capacity with future directions are discussed. Primary Health Care Services for Children and Adolescents Primary health care services across different countries vary widely in terms of setting, staffing, funding source and levels relative to the size of the population. Those for children and adolescents are delivered by a range of physicians (general practitioners/family physicians, general and community pediatricians) and non-physicians (nurses, health visitors, public health workers). They are based in primary care clinics, health centers, child health clinics, school medical services, emergency departments and ambulatory hospital/out-patient departments. Funding may be private, on the basis of insurance, or part of centrally organized national or regional health services. A European survey demonstrated that 35% (12 of 34) of countries who took part had a system of pediatric primary care provided by pediatricians, 18% (6 of 34) by general practitioner/family doctor systems but the majority (47% or 16 of 34) had mixed systems (Katz, Rubino, Collier, Rosen, & Ehrich, 2002). Level, type and quality of care varied widely, with only 40% of countries having community pediatricians (defined as those concerned with recognition, prevention and treatment of community health problems such as child protection, children in need, behavior problems, teenager approach, growth and development, school medicine). Postgraduate training in pediatric primary care was available for the majority but not for all pediatric or family medicine trainees and levels of training in child protection were much lower, particularly for family medicine trainees. Within the USA, both pediatricians and family physicians provide pediatric primary care. However, increasingly over the last 20 years these services have been provided by pediatricians (Freed, Nahra, & Wheeler, 2004). Particularly in more affluent areas, services often integrate well care and acute care. In many other countries, preventative services are offered in different settings from those providing acute illness care (Cheng, 2004). In contrast, in Canada, pediatric primary care is provided largely by general practitioners and public health units. In many developing countries, public health workers provide the point of first contact with health services and pediatricians provide specialized Western-type medical care (Cheng, 2004). Thus, globally, the differences in level of provision, structure of services and competencies of personnel delivering the services are important and likely to impact on the potential to provide mental health services for children and adolescents within the primary care setting. In addition to the nature and distribution of primary care services, this potential will be determined by patterns of attendance (i.e., who uses the service, how frequently and the nature of their needs). Primary Care as a First Point of Contact for Child and Adolescent Mental Health Problems Frequency of Contact Contact with primary health care is a common experience in childhood. Over the course of 1 year, most parents take their children to primary care services, and work with children has been estimated to occupy one-quarter of the doctor’s 1167 Primary Health Care Psychiatry 72 Tami Kramer and Elena Garralda 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1167 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

time. There are age trends, with young preschool children being seen more often than older children. Within the UK, over 90% of preschool age children and about two-thirds of 5- to 14-year-olds will consult primary care at least once a year (OPCS, 1995). A study of a large London inner city practice demonstrated that over 50% of 13- to 17-year-olds who were registered had attended in 1 year (Kramer, Illife, Murray, & Waterman, 1997). Within the USA, it has been reported that more than 70% of adolescents see a physician at least once each year (Frankenfield, Keyl, Gielen et al., 2000). This suggests a significant potential for attention to mental health within this context. Modes of Presentation The majority of the consultations are for physical health problems. Surveys in various countries have documented that 2–5% of children and adolescents attending primary care or general pediatric clinics present primarily for psychological problems (e.g., anxiety, behavioral problems and overactivity; Garralda & Bailey, 1986; Jacobson, Goldberg, Burns et al., 1980; Kramer & Garralda, 1998; Starfield, Gross, Wood et al., 1980). Higher rates of 10% for emotional–behavioral presentations have been given in some reports. Educational and social problems also feature as reasons for consultation. Frequency and Nature of Associated Psychiatric Disorder There is evidence that psychiatric disorders are present in a considerably higher number of children attending primary care than may be expected from the overt presenting complaint. Research interviews with children and parents, following primary care contact, have found disorders in one-tenth to one-quarter of children across different countries (Costello, Costello, Edelbrock et al., 1988; Garralda & Bailey, 1986; Giel, de Arango, Climent et al., 1981; Gureje, Omigbodun, Gater et al., 1994), with higher rates in adolescents (40%; Kramer & Garralda, 1998) and in schoolchildren attending hospital pediatric out-patient departments (28%; Garralda & Bailey, 1989). Although the range of disorders is seen, in contrast with population surveys, emotional disorders predominate over conduct disorders (Garralda & Bailey, 1986; Kramer & Garralda, 1998), suggesting a specific role for primary care in identifying and managing anxiety and depressive disorders. In the UK, levels of depressive symptoms in adolescents attending primary care have been shown to be high in both urban and suburban areas (with significantly different levels of psychosocial disadvantage), reinforcing the relevance of primary care for adolescent depression across socioeconomic groups (Yates, Kramer, & Garralda, 2004). This study found that the presence of depressive symptoms in adolescents was associated with an increased risk of substance abuse and with parental psychiatric symptoms, while a study in the USA found links with school problems and substance abuse (Burns, Cottrell, Perkins et al., 2004). These associations suggest that identification of psychopathology within primary care will provide an opportunity to identify and address a wider range of psychosocial difficulties. Implications of the High Levels of Hidden Psychiatric Disorder Do psychiatric disorders contribute to physical consultations in children and young people? Psychiatric symptoms have been found to be linked to high use of primary care and of other medical services by children and young people (Lavigne, Arend, Rosenbaum et al., 1998; Meltzer, Gatward, Goodman, & Ford, 2000; Monck, Graham, Richman, & Dobbs, 1994; Offord, Boyle, Szatmari et al., 1987; Richman, Stevenson & Graham, 1982; Yates, Kramer, & Garralda, 2004). Adolescent primary care attenders with associated psychiatric disorder describe greater frequency and more intense physical symptoms causing impairment than those without associated disorder (Kramer & Garralda, 1998). Children with psychiatric disorders who are frequent primary care attenders do not present with a particular physical problem. Nevertheless, their mothers view them as more lethargic, in poorer general health and more handicapped by their symptoms than mothers of frequent attending children without psychiatric disorder (Garralda, Bowman, & Mandalia, 1999). In younger children who are brought to the surgery, maternal anxiety about the child is likely to be a factor leading to presentation. In a study of frequent surgery attenders (Garralda, Bowman, & Mandalia, 1999), mothers of children who had psychiatric disorders reported generally more stress in work, finances and relationships. However, what differentiated them most strongly from other mothers was the stress they felt about their child; over half of the mothers of children with disorder (compared with 10% of those without) felt highly stressed about them. Because they also saw these children as in comparatively poor physical health, it would seem logical to seek relief from this by focusing on symptoms for which help is available at the surgery. Nevertheless, this relief may be expected to be only partial, as it does not address the reasons that were presumably stressing mothers most and leading to frequent consulting, namely the child’s psychological distress and its management. Primary care practitioners could be more helpful to the child and mother if attention was directed directly to these associated emotional difficulties. Functional Somatic Symptoms and Psychosomatic Presentations Addressing mental health issues is of special relevance in the primary care setting, first for children presenting with recurrent and impairing functional or unexplained medical symptoms; and, second, when clinicians suspect that problems in psychiatric adjustment affect the child’s ability to manage physical problems effectively. Recurrent unexplained functional physical symptoms (e.g., abdominal pains, aches and pains, and fatigue) are commonly seen in primary care. They can be an expression of the somatization of distress and are often seen in conjunction with psychiatric disorders (see chapter 57). Campo, JansenMcWilliams, Comer et al. (1999) reported frequent complaints of aches and pains with no organic diagnosis in 2% of 11- to 15-year-old pediatric primary care attenders, and occasional CHAPTER 72 1168 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1168

complaints in 11%, with a ratio of two girls to one boy. In about half of the children – significantly more than in children attending with other complaints – doctors and parents identified psychosocial problems and impairment caused by the symptom, and about one-third were described as frequent health service users. In 8- to 15-year-olds with recurrent abdominal pain attending primary care, Campo, Bridge, Ehmann et al. (2004) identified a comorbid anxiety disorder in as many as 79% and a depressive disorder in 43%, as well as an excess of temperamental harm avoidance and functional impairment. The close links between emotional and functional physical symptoms in children is further supported by indications that parental anxiety in the first year of the child’s life, together with reports of irregular feeding and sleeping habits in the child, can predict recurrent abdominal pains later in childhood (see chapter 57; Ramchandani, Stein, Hotopf et al., 2006). Psychosocial problems and psychiatric disorders can adversely affect the physical health of a broader group of children. When doctors are asked to note any physical presentation with associated or contributing psychological factors (e.g., asthma exacerbated by stress), such presentations are recorded for about one-fifth of schoolchildren attending primary care and for as many as half in out-patient pediatric clinics, indicating a high degree of sensitivity and vigilance by many clinicians to these issues (Bailey, Graham, & Boniface, 1978; Garralda & Bailey, 1987, 1990). Presenting symptoms in these cases tend to be those regarded traditionally as having psychosomatic components (e.g., aches and pains, incontinence, asthma and blackouts) but virtually all physical complaints are featured. These children have an excess of emotional and behavioral symptoms, including mood changes and relationship problems. However, most do not have a psychiatric disorder. Mothers’ stress over parenting, and concerns over schooling have particularly been noted in primary care settings, suggesting the relevance of high academic and behavioral expectations. Addressing the psychosocial concerns of families with children with psychosomatic presentations may have substantial consequences for medical service use. These families have a high tendency to focus on health issues, as shown by the fact that they are high users of primary care. The children themselves are given more hospital appointments, more referrals to specialist clinics and more follow-up appointments at the surgery than children with purely physical presentations (Campo, Jansen-McWilliams, Comer et al., 1999; Garralda & Bailey, 1987). Thus, at the first point of contact with primary care, professionals could maximize the impact of the contact if they are alert to looking for hidden or associated emotional and behavioral difficulties and recognize links with physical presentation. Clarifying Demand and Diagnosing Disorder Attention to mental health is only possible once need has been recognized and demand for intervention clarified. Rates of recognition within primary care have been shown to be poor (Brugman, Reijneveld, Verhulst, & Verloove-Vanhorick, 2001; Chang, Warner, & Weissman, 1988; Costello & Eddelbrock, 1985; Garralda & Bailey, 1986; Glazebrook, Hollis, Heussler, Goodman, & Coates, 2003; Kramer & Garralda, 1998; Sayal & Taylor, 2004), with poor sensitivity and high specificity (Brugman, Reijneveld, Verhulst et al., 2001). Most affected children fail to receive any mental health services (Burns, Costello, Angold et al., 1995; Rushton, Bruckman, & Kelleher, 2002; Verhulst & Van der Ende, 1997). Recognition has been linked to severity of disorders, age (best in 7- to 14-year-olds), male gender, the presence of social difficulties (being on welfare, broken homes), presenting symptoms (chronic conditions, digestive problems and ill-defined problems), type of consultation (to well child clinics rather than acute care visits), clinician relationship with the child and parental perception of difficulty (Goldberg, Regier, McInerny et al., 1979; Horwitz, Leaf, Leventhal, Forsyth, & Speechley, 1992; Kramer & Garralda, 1998). Sayal and Taylor (2004) demonstrated that parental expression of concern during consultation increased the sensitivity of doctor recognition of mental health problems. In very young children (11–39 months), Ellingson, Briggs-Gowan, Carter, and Horwitz (2004) demonstrated that parental discussion with the primary care provider was associated with parental worry and perceived low socioemotional competence in the child, and with disruption to family routines. Nevertheless, even though many parents believe it is appropriate to express concerns about child behavior to a primary care provider, few parents who have concerns do so (Dulcan, Costello, Costello et al., 1990; Ellingson, Briggs-Gowan, Carter et al., 2004; Horwitz, Leaf, & Leventhal, 1998; Sayal & Taylor, 2004). Thus, education, which enables parents to identify their children’s needs, express these within the consultation and understand the potential for intervention, is an important first step in promoting identification within the primary care setting. The use of screening questionnaires has been considered as a potentially quick and easy method to improve primary care identification (see chapter 20) across the age range (Borowsky, Mozayeny, & Ireland, 2003; Briggs-Gowan, Carter, Irwin, Wachtel, & Cicchetti, 2004; Luby, Heffelfinger, KoenigMcNaught, Brown, & Spitznagel, 2004). Information was improved if collected from both parents and children (Wildman, 2000; Wren, Bridge, & Birmaher, 2004) and at all types of visit to the service (i.e., whether injury or illness related visits as opposed to routine screening visits alone; Borowsky, Mozayeny, & Ireland, 2003). However, questionnaires alone are likely to over-identify the number of children requiring further assessment and intervention, and burden the limited resources. The primary care professional will still need to use clarifying questions about the nature, severity and associated impairment of any symptoms before deciding on appropriate action. Question-naires may be best used to provide a guide as to when psychological, behavioral and psychosocial routes of inquiry should be followed. Training for primary care physicians in the use of psychiatric diagnostic classifications such as ICD-10 or DSM-IV PRIMARY HEALTH CARE PSYCHIATRY 1169 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1169

has been seen as a potential means of improving diagnostic reliability, treatment planning and communication between clinicians. In order to promote and facilitate the use of these classifications in primary care, versions specifically relevant to this setting have been developed, ICD-10 Primary Health Care and DSM-IV Primary Care (American Psychiatric Association, 1995; WHO, 1996) including advice on the management of children and adolescents with disorder ( Jenkins, 2004). However, in the USA, Gardner, Kelleher, Pajer, and Campo (2004) demonstrated that primary care clinicians used DSM criteria in only 23% of visits where psychosocial problems were recognized, mostly for ADHD symptoms; in this survey half reported no use of DSM criteria whatsoever. The majority of primary care clinicians in the UK regularly use Read Codes to record patient signs, symptoms and interventions (www.connectingforhealth.nhs.uk/terminology/readcodes/ faqs/index_html#6) whereas within the rest of Europe and Australia, use of the International Classification of Primary Care (ICPC-2; WONCA, 1998) is widespread. Although categories within both these systems have been linked with ICD-10 categories, evidence of practitioner knowledge and use of the criteria for psychiatric disorder in children and adolescents is lacking. A cluster randomized study of 30 primary care practices, following dissemination of Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 (WHO, 1996) in adult patients, failed to demonstrate improved sensitivity or specificity of diagnosis in clinicians who received the guidelines (Croudace, Evans, Harrison et al., 2003). The potential of these guidelines for use with children and adolescents, and in developing countries with very scarce specialist resources, has not been documented. Systematic mental health screening of all child and adolescent attenders (at well child and other visits) would reach a large proportion of the population and reveal many of the currently untreated cases. However, as well as training primary care providers to do this, additional resources for intervention will be required. Primary care providers are unlikely to identify needs unless they are able to intervene. Offering Advice and Treatment Thus, large numbers of children and adolescents presenting to primary care with physical complaints have concurrent emotional difficulties. Primary care is viewed by many service users as more accessible and less stigmatizing than mental health services. Even where child mental health services are well developed, only a small proportion of psychiatrically disordered young people currently access these services (Rushton, Bruckman, & Kelleher, 2002) and specialist child and adolescent mental health services are already often working to full capacity or overburdened with long waitlists for treatment (US Public Health Service, 2000). Thus, policy-makers in the UK (Health Advisory Service, 1995) and the USA (US Public Health Service, 2000) have highlighted the need for improved provision within the broad range of services already in contact with children and adolescents (e.g., preschool, childcare, education, health, welfare, juvenile justice). If services are to become more available within primary health care, it makes sense to conceptualize a stepped provision with improved primary care recognition, followed by advice and treatment within primary care of the less complex and severe difficulties. Limited consultation duration presents a potential barrier to such interventions. One US study of 2- to 18-year-olds found that pediatricians spent an average of 10.3 min in each well visit consultation (Reisinger & Bires, 1980). A study of adolescent consultation times in the UK (Jacobson, Wilkinson, & Owen, 1994) demonstrated that consultation duration of 11- to 19-year-olds was shorter than for any other age group. Also, little is known about which child and adolescent mental health interventions are appropriate and effective when offered within primary care. Bower, Garralda, Kramer, Harrington, and Sibbald (2001) carried out a systematic review and identified three types of child mental health intervention offered within primary care: management by specialist mental health professionals based in primary care (often referred to as shifted out-patient clinics); treatments offered by the primary care team; and consultation liaison models. They documented that there were a limited number of studies, many of which were of poor quality, and concluded that a significant program of research was required if the potential for child and adolescent mental health services in primary care was to be realized in an effective and efficient way. Shifted Out-patient Clinics Most early work on children and adolescents with actual psychiatric disorders involved treatment by specialist staff within primary care (so-called shifted out-patient clinics). Interventions described were brief (6–12 sessions) and included a variety of techniques: cognitive–behavioral therapy, family therapy, non-directive counseling, dynamic therapy, psychiatric evaluation and guidance, parent education and counseling, group work and child education (Bower, Garralda, Kramer et al., 2001). Studies consisted largely of simple before–after designs without control groups and often lacked details on the process of treatment delivery. Two large-scale studies that used randomization failed to demonstrate a marked effect on child health outcomes (Cooper & Murray, 1997; Nicol, Stretch, & Fundudis, 1993). Conclusions about effectiveness are therefore tentative. Moreover, provision of comprehensive coverage of this nature by specialist staff would require marked expansion of specialist services, is unlikely to be cost-effective and may not be achievable. Treatment by the Primary Care Team There is little information on the management of child emotional and behavioral difficulties offered by the actual primary care team. Bower, Garralda, Kramer et al. (2001) reviewed six studies of treatment offered by the primary care team, offering a variety of interventions for different problems. Of CHAPTER 72 1170 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1170

the four controlled studies, only the study by Cullen (1976) and Cullen and Cullen (1996), of preventative interviews with preschool children, demonstrated significant objectively improved outcomes. Wren, Scholle, Heo, and Comer (2005) documented the practice of 395 primary care clinicians during consultation with 20,861 consecutive attenders aged 4–15 years in the USA, Puerto Rico and Canada. Children identified as having a mood or anxiety syndrome were no more likely to be counseled during the visit than those with other psychosocial problems, and – unless accompanied by a comorbid behavioral syndrome – they were offered fewer scheduled follow-up appointments. Rates of prescription of antidepressants or antianxiety agents were comparatively higher for the mood/anxiety groups but this was still uncommon (6.7%) and they were also more likely to be referred to mental health services. Thus, even when identified, active management by primary care was uncommon in this group. This may be because primary care clinicians feel more responsible for recognizing than for treating child and adolescent depression. In Olson, Kelleher, Kemper et al. (2001) survey, respondents reported providing a wide range of brief interventions to almost 80% of young people with depression and prescribing medication to approximately 20%, but they also reported referring a similar proportion to mental health professionals. Factors limiting diagnosis and management most frequently cited included time and training/ knowledge and, less commonly, financial or patient issues. However, the response rate in this survey (55–63%) was modest, and it is unclear whether these findings are broadly representative. Consultation Liaison Models Consultation liaison, in which the specialist acts to support management by primary care rather than take responsibility for individual patients (Gask, Sibbald, & Creed, 1997), has traditionally been viewed as a means of increasing the capacity of primary care clinicians to offer mental health services, partly through improving their skills and knowledge. In their review, Bower, Garralda, Kramer et al. (2001) identified only one study of consultation liaison offered to primary care personnel by specialist child and adolescent mental health workers (Neira-Munoz & Ward, 1998). The intervention (which included reviewing referrals, running liaison clinics and seeing patients on their own) was associated with a reduction in the rate of referrals to specialist mental health services and an increase in appropriateness. The service was rated highly by primary care staff but only one-third of primary care doctors thought that the liaison clinics increased their knowledge and skills. Connor, McLaughlin, Jeffers-Terry et al. (2006) have described a similar model of collaboration, in the USA. A child psychiatrist or specialist nurse offers telephone consultation during office hours (139 primary care practitioners in 22 practices). A proportion of cases will then be managed within primary care while the rest are referred to the child psychiatrist for assessment within 4 weeks. During the first 18 months, the child psychiatrist offered direct evaluation of 329 (54%) patients. Time was also spent educating primary care practitioners in case conferences and informal consultations. Neither of these reports included data on patient outcomes and both models included specialist mental health clinicians working primarily on this “specialist” area, consultation liaison with primary care. A survey of all specialist child and adolescent mental health services in England demonstrated that collaborative work with primary care was significantly associated first with a developed “specialist” provision for this, and second with larger sized mental health services (Bradley, Kramer, Garralda et al., 2003). This suggests that it is difficult for individual mental health clinicians to facilitate collaboration on their own when they have a broad range of other commitments. Furthermore, if there is an increase in collaboration, future work will need to address more clearly medicolegal responsibilities in those cases where primary care practitioners provide treatments on the advice of specialist clinicians, especially prescription of psychotropic medications, where primary care practitioners may have limited training and experience. Use of Psychotropic Medication for Child and Adolescent Depression There is evidence that prescribing of pediatric psychotropic drugs has increased over recent years across many countries (UK, USA, Canada, France, Germany, Spain, Argentina, Brazil and Mexico; Wong, Murray, Camilleri-Novak, & Stephens, 2004). More specifically, in the UK there has been an increase in prescriptions of antidepressants by primary care clinicians, between 1992 and 2002, especially of selective serotonin reuptake inhibitors (SSRIs) and venlafaxine rather than tricyclic antidepressants (Murray, de Vries, & Wong, 2004, Murray, Wong, & Thompson, 2005). However, treatment is often not sustained, with more than half of subjects discontinuing treatment after 2 months. Similarly, in the USA only 47% of youth continued out-patient treatment with anti-depressants at 3 months and 26% at 6 months, suggesting both inadequate duration of treatment and follow-up (Richardson, DiGiuseppe, Christakis, McCauley, & Katon, 2004). In a survey in North Carolina, 91% of family physicians (n = 242) and 58% of pediatricians (n = 349) had prescribed SSRIs for pediatric patients, most commonly for depression (Rushton, Clark, & Freed, 2000). In this study, very few physicians (8%) reported adequate training in the treatment of adolescent depression. In a large community survey, approximately 1% of children and adolescents received out-patient treatment for depression, a rate below epidemiological prevalence estimates (2–8%) (Olfson, Gameroff, Marcus, & Waslick, 2003). Anhedonia was more common in adolescents receiving medication prescribed by psychiatrists, pediatricians or other physicians, but treatment was otherwise unrelated to measures of clinical severity (Olfson, Gameroff, Marcus et al., 2003), despite the recommendation of the American Academy of Child and Adolescent Psychiatry that antidepressant use should be limited to those with severe or psychotherapy-resistant disorders PRIMARY HEALTH CARE PSYCHIATRY 1171 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1171

(American Academy of Child and Adolescent Psychiatry, 1998). Following widely publicized safety concerns and recommendations about the use of SSRIs, and the recommended ban of those other than fluoxetine as a treatment in child and adolescent depression (CSM, 2005), fewer children and adolescents have been prescribed antidepressants in primary care (Murray, Wong, & Thompson, 2005). It is unclear whether this reduction in drug treatment has resulted in more psychotherapeutic treatments being offered as an alternative in the UK, but in the USA provision of psychotherapy/mental health counseling declined between 1995–1996 and 2001– 2002 (Ma, Lee, & Stafford, 2005). Thus, comprehensive treatment of depressive disorders within primary care will require improved education of primary care providers in the treatment of depression and will need to address a balance of psychotherapeutic and medical interventions in addition to approaches to improve compliance and follow-up. Complex Interventions for Adolescent Depression in Primary Care Systematic reviews of screening and intervention programs for adult depression in primary care have outlined a range of issues that are relevant to intervention with young people. Simple educational strategies for staff or passive dissemination of formal guidelines to improve recognition and management have had minimal effect, whereas multifaceted programs that integrate improvements in detection, treatment and follow-up are most effective (Gilbody, Whitty, Grimsha, & Thomas, 2003; Katon, Von, Lin et al., 1999; Pignone, Gaynes, Rushton et al., 2002; WHO, 2004). These include combinations of clinician and patient education, nurse case management, enhanced support from specialist services and monitoring of medication. Further research is needed to clarify which elements of these complex interventions are active ingredients, who benefits most from different elements of the interventions, and to what extent the programs can be translated between different settings in different countries. In light of the adult findings, Asarnow, Jaycox, Duan et al. (2005b) carried out a landmark study of adolescents in six primary care centers in the USA. They included two public sector, two managed care and two academic health programs and enrolled 418 patients aged 13–21 years into a randomized controlled trial of a “quality improvement intervention” versus usual care. The quality improvement intervention included: 1 Expert leader teams at each site to implement and adapt the intervention; 2 Care managers to support primary care clinicians with evaluation, education, medication and psychosocial treatment, and with linkage with specialist mental health services; 3 Training care managers in manualized cognitive–behavioral therapy (CBT) for depression; and 4 Access to participant and clinician choice of treatment. Treatment options included CBT, medication, combined CBT with medication, care manager follow-up, or specialist referral. Usual care was enhanced by providing primary care clinicians with training and educational materials on depression evaluation and treatment. Six months after assessment, quality improvement patients reported significantly fewer depressive symptoms, higher mental health-related quality of life and greater satisfaction with mental health care. They had also received significantly higher rates of mental health care and psychotherapy or counseling. Enhancement of usual care meant that the benefits detected are probably conservative. However, almost one-third of quality improvement patients continued to show severe depressive symptoms. Increased use of combined psychotherapy and medication might have led to improved outcomes in this group (March, Silva, Petrycki et al., 2004). Moreover, screening and recruitment resulted in the loss of many young people from the study, indicating that this approach may benefit only a selected group and longer-term benefits require further study. Nevertheless, this study demonstrated improved quality of care, increased access to evidencebased treatments and favorable outcomes through increased support to primary care clinicians in naturalistic settings. In the UK, Gledhill, Kramer, Iliffe, and Garralda (2003) have developed “therapeutic identification” techniques that incorporate training for general practitioners in the identification of depression with opportunistic intervention based on cognitive and interpersonal principles. In one large practice this was shown to be feasible in a pilot study, to lead to improved doctor detection rates and adolescent clinical outcomes, but it needs to be further evaluated and shown to be cost and clinically effective before it can become recommended practice. Approaches such as this that enhance the mental health care provided within primary care in contrast with traditional “shifted” out-patient specialist clinics, may offer the potential for more comprehensive and effective provision, but practically implementation requires investment in primary care and realignment of professional roles. Intervention for depressive disorders is the most obvious focus for intervention by primary care workers with adolescents, because of the large contribution to hidden morbidity and the long-term adverse outcome (Asarnow, Jaycox, Duan et al., 2005a). However, other important areas for future investigation include intervention for anxiety and somatization-related or somatoform disorders in children, and disruptive disorders (Lavigne, Binns, Christoffel et al., 1993). The development in primary care of appropriate techniques for the identification and management of functional or somatization-related somatic symptoms is especially relevant. Identification of these children can be aided by establishing the unexplained nature and impairment caused by the physical symptoms and taking notice of risk factors such as family social or structural problems, parental somatization and school problems (Konijnenberg, de Graeff-Meeder, van der Hoeven et al., 2006). Discussion of psychosocial issues needs to take special account of sensitivities by many parents and children in addressing these issues, as some parents – especially those of the more severely affected children – may feel undermined and threatened when these are explored, which CHAPTER 72 1172 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1172

leads to their stressing the physical aspects of the child’s presentation (Smart & Cottrell, 2005). Coordinating Care The primary care clinician has a central role in coordinating care. Coordination includes referral to specialist or other services, as well as long-term management of those with chronic or complex conditions with support from specialist services. Referral to Specialist Services The most frequent interface between primary care and child psychiatry or mental health services is through referral to specialist psychiatric services. This may follow less than 10–17% of psychiatric presentations to primary care practitioners (Brugman, Reijneveld, Verhulst et al., 2001; Garralda & Bailey, 1988; OPCS, 1995). The psychiatric referral of schoolchildren by primary care practitioners has been found to be linked to the severity of the child’s disorder, male gender, the presence of antisocial symptoms and/or relationship problems and to psychosocial disadvantage (i.e., family stress, unemployment; Garralda & Bailey, 1988). Higher severity and male gender have also been confirmed as factors in other studies (Laclave & Campbell, 1986; Lavigne, Arend, Rosenbaum et al., 1998). One Dutch study found no link between referral and sociodemographic factors (Brugman, Reijneveld, Verhulst et al., 2001). In this setting with a highly developed preventative child health system (90% of children and adolescents receive 3–4 preventative assessments during childhood and adolescence), referral was related to information regarding the mental health of the child per se. This may indicate practice that is directly focused on specific mental health need rather than on associated psychosocial risks. In most settings, parental request remains a central determinant for referral, the role of general practitioners and pediatricians tending to remain more passive (Bailey & Garralda, 1989; Briggs-Gowen, Horwitz, Schwab-Stone, Leventhal, & Leaf, 2000; Sayal, Taylor, Beecham, & Byrne, 2002). Parents’ views on the passive role taken by practitioners remain unclear, although one study found most parents of referred children to be satisfied (Bailey & Garralda, 1989). For clearly diagnosable psychiatric problems in children who are not already under the care of mental health services, the primary care clinician needs to make decisions about whether and how to refer. Although existing research indicates that psychiatric referrals by primary care doctors are generally appropriate, increasing awareness of child and adolescent psychiatric problems by parents and primary care teams is likely to result in more referrals than specialist services can possibly accommodate. Protocols refining the criteria for severity, psychosocial complexity and likely response to treatments will need to be developed and audited jointly by child and adolescent and primary care services. Consultation liaison activities by child and adolescent mental health services may be particularly helpful in developing this work. Managing Chronic Conditions For problems such as hyperkinetic disorder, it has been shown that once recognized by the general practitioner or family doctor a referral to specialist services usually follows (Sayal, Taylor, Beecham et al., 2002). Other primary providers (e.g., pediatricians) are likely to initiate some treatment but mental health specialists will need to become involved in resistant cases or those with comorbidity (e.g., severe conduct disorder, tic disorders). As a chronic disorder with high levels of comorbidity, a comprehensive model of care could include long-term monitoring within the primary care setting with intermittent involvement of specialist services as appropriate for medication review or adjuvant behavior therapy. However, general practitioners have been shown to be skeptical about hyperkinetic disorder as a diagnostic entity (Klasen & Goodman, 2000). Adequate training and ongoing support are therefore necessities if such a model of joint working is to be developed. Traditional consultation–liaison work by specialist child and adolescent mental health staff provides a mechanism for this joint working but has been limited by a lack of capacity. More recent models of improved collaboration have been facilitated through the use of non-physician care managers/professionals with specialized clinical and behavioral skills, who prioritize frequent communication with primary care clinicians and also maintain strong links with specialist mental health services. Prevention and Early Intervention Primary care services provide the most widespread point of access to health services among both the better and the less developed health care systems. As such, they are crucially placed for a role in prevention and early intervention for mental health problems of children and adolescents. Many broad public health programs relevant to primary care, impact on the primary prevention of mental distress and disorder in young people by targeting risk and resilience factors. Examples are family planning programs, prenatal care, promotion of adequate nutrition, child safety information and home visiting programs. These programs are implemented by a range of professionals including general/family practitioners, primary care pediatricians (e.g., in the USA), community pediatricians and health visitors (e.g., in the UK) or community nurses, all of whom are in an ideal position to disseminate information on child health, development, behavior and positive parenting (Bower, Macdonald, Sibbald et al., 2003). An early study of preventative general practitioner consultations during a child’s first 4 years demonstrated favorable outcomes at 6 and 20 years later (Cullen, 1976; Cullen & Cullen, 1996). This study demonstrated that mental health promotion interventions can be carried out systematically by general practitioners or family doctors who, through regular supervision, may be able to influence parental actions and have some long-lasting effects on their children’s behavior. However, it is unlikely that many general practitioners or pediatricians would be able to invest the time required into such an intervention. PRIMARY HEALTH CARE PSYCHIATRY 1173 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1173

It may be more practical and cost-effective to implement prenatal and infancy home visiting by trained nurses with mothers at high risk of difficulties (see chapter 61). Olds (2002) and Olds, Eckenrode, Henderson et al. 1997, Olds, Henderson, Cole et al. 1998, Olds, Kitzman, Cole et al. 2004), in a program whereby mothers were visited during pregnancy and up until the child’s second birthday, have demonstrated in three large randomized controlled trials benefits for young, low-income, unmarried mothers and children. Improved parental care of the child included fewer injuries and accidental substance ingestions, which may in some cases reflect child abuse and neglect, fewer emergency visits and less use of punishment in the first 4 years. Further beneficial changes with regard to maternal life-course include fewer subsequent pregnancies, greater workforce participation and reduced use of public assistance and food stamps. In the first trial, the program also produced longer-term effects on the number of arrests, convictions, emergent substance use and promiscuous sexual activity of 15-year-old children. However, not all home visiting programs have been shown to be effective. A number of attempts at training primary care community nurses or health visitors to promote parenting in order to reduce behavioral problems in young children have reported inconsistent or equivocal results, and this remains an area requiring further exploration (Bower, Garralda, Kramer et al., 2001). It is important to establish which elements of such interventions are the minimum required to achieve mental health gains for children (see chapter 61). Secondary prevention, aimed at early detection and diagnosis, is integral to child surveillance programs, and can be implemented by professionals in a range of primary care settings across different countries. For example, communitybased group parenting programs, addressing child behavioral difficulties, have been shown to improve parenting practices, parent–child interactions and child behavior through multiple, independently replicated, randomized controlled trials (Scott, Spender, Doolan et al., 2001; Webster Stratton, 1989, 2001). In developing countries, where most of the health care is delivered by the primary or the general health care team, detection of developmental delays and epilepsy is also relevant. However, research is required to ascertain whether systematic early detection by primary care personnel would lead to better outcomes in the medium to long term. The role of primary care personnel in suicide prevention has been well described (Gould, Greenberg, Velting, & Shaffer, 2003; Mann, Apter, Bertolote et al., 2005). Many suicidal young people (aged 15–34 years) have contact with primary care in the month prior to suicide or self-harm (Luoma, Martin, & Pearson, 2002; Pfaff, Acres, & Wilson, 1999). However, a study of pediatricians and family physicians in the USA revealed that fewer than half reported that they routinely screened their adolescent patients for suicide risk (Frankenfield, Keyl, Gielen et al., 2000). Although the Gotland study (in Sweden) demonstrated a decline in adult suicide rate following general practitioner education to improve diagnosis and treatment of depression, this was not maintained at followup (Rutz, von Knorring, & Walinder, 1992). A 1-day training course for general practitioners in Australia enhanced detection rates of adolescent psychological distress and suicidal ideation, but failed to lead to changes in patient management (Pfaff, Acres, & McKelvey, 2001). As with treatment for depression, educational approaches alone may prove insufficient to change the management of suicidal young people in primary care, and systematic screening may need to be integrated into more complex multifaceted approaches. Parental Substance Misuse and Psychiatric Disorder Children of parents with substance misuse problems and other psychiatric disorders such as depression and anxiety are at increased risk of developmental, emotional and behavioral difficulties (see chapter 27; Nomura, Wickramaratne, Warner, Mufson, & Weissman, 2002; Weissman, Feder, Pilowsky et al., 2004; Whitaker, Orzol, & Kahn, 2006). Primary care clinicians may be treating these adults or be aware that they are receiving help from specialist services. They should be alert to the increased risks for these children and especially vigilant in relation to their general and mental health needs. Advice, support and guidance for mothers on child rearing may lead to more favorable outcomes for children. Increased support to improve access to specialist services may also be required. Building Capacity in Primary Care Integration of mental health provision for children and adolescents into primary care requires improved professional knowledge, skills and attitudes as well as changes to service delivery systems to support this. Educational interventions should address health workers’ undergraduate and postgraduate education. A number of initiatives have addressed this (Bernard, Garralda, Hughes, & Tylee, 1999; Bower, Garralda, Kramer et al., 2001; de Jong, 1996; Dogra, Frake, Bretherton, Dwivedi, & Sharma, 2005; Hughes, Garralda, & Tylee, 1995; Sanci, Coffey, Patton, & Bowes, 2005). Evaluation tends to show benefits by increasing skills and confidence of primary health care staff, but few studies have been methodologically rigorous. Leaf, Owens, Leventhal et al. (2004) demonstrated that pediatricians with advanced training in psychosocial problems were more likely to identify children’s psychosocial problems and use multiple management strategies compared with pediatricians without specialized training. However, not all general practitioners, pediatricians and other primary care staff wish to obtain training and implement potentially effective management techniques. Primary care is being expected to fulfill an everincreasing number of preventative and curative interventions and some degree of prioritization is required. While some practitioners welcome the conceptual clarity and management guidance offered by psychiatric terminology and thinking, others have concern about medicalizing distress, especially in children and adolescents (Iliffe, Gledhill, daCunha, Kramer, CHAPTER 72 1174 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1174

& Garralda, 2004). Future work may helpfully clarify which primary care practitioners are especially well suited to the task of promoting and managing child and adolescent mental health. Furthermore, clarification is needed about which specific components of evidence-based knowledge and skills should be included. Improved training may not be enough to bring about the required change. Alteration to service delivery systems (Pincus, Pechura, Elinson, & Pettit, 2001) and the development of innovative roles for new workers may be required. This has recently been attempted within the UK. Policy aimed at improving access to child and adolescent mental health services led to the development of primary mental health workers (PMHWs) to work with both primary and specialist child and adolescent mental health services performing the following functions: 1 Consolidating the skills of existing workers in primary services; 2 Helping workers in primary services develop new skills and confidence through training and education; 3 Supporting recognition of disorders and their referral to more specialist services if appropriate; and 4 Assessing and treating some individuals (Department of Health, 2004). Initially, posts were filled by a variety of professionals including a majority of nurses but also by social workers, psychologists and others with significant experience of working in child mental health services (Bradley, Kramer, Garralda et al., 2003). Their presence has been shown to bridge the wide gap between primary care and specialist mental health services (Macdonald, Bradley, Bower et al., 2004) and improve integration of primary and secondary services. However, subsequent expansion of the role, with a limited pool of experienced professionals available for recruitment, would have led to the recruitment of professionals with less experience, raising questions about their effectiveness. Shortages of appropriately skilled personnel are likely to be a limiting factor in any program aiming to expand provision in primary care, underlining the need for training. There has also been a rapid expansion of specialist liaison nurse posts with roles similar to those of the PMHW within other medical services (e.g., in palliative care, asthma, epilepsy, infection control, HIV/AIDS; Hobbs & Murray, 1999). Surveys reveal high levels of patient satisfaction but there have been few randomized controlled trials to look at clinical and cost-effectiveness. Where these have been undertaken, evidence of effectiveness is conflicting (Hobbs & Murray, 1999). Research is needed to evaluate the impact of PMHWs on patterns of service use and health outcomes. Another program with similar features has been developed in the USA in a large rural pediatric practice (Campo, Shafer, Strohm et al., 2005). After identification of emotional or behavioral problems by primary care clinicians, young people are offered an assessment of their clinical need by an advanced practice nurse (APN). Based on the level of impairment, complexity of the mental health problem, treatment history and needs, young people are triaged to routine care by primary care clinicians with APN support, to on-site mental health service for intervention or psychiatric consultation by the APN, psychiatric social worker and/or part time pediatric psychiatrist, or referred to specialist mental health or emergency mental health services. In the course of 1 year, 789 (2.5%) primary care visits were referred for triage. Of these 789 visits to the APN, 279 (35%) represented first-time or new mental health contacts. Of these 187 (67%) received routine care, 52 (19%) received on-site mental health services, 36 (13%) were referred to specialist mental health services and 4 (1%) were referred for emergency evaluation and admission. Although at 2.5% the overall proportion of children requiring triage was low, the vast majority of new mental health contacts were assessed to be treatable within primary care, with most receiving intervention from the primary care clinician with APN support. Pillay and Lockhat (1997) described a community program in South Africa. As in many developing countries, South Africa has a large proportion of young people in its population, and mental health services are lacking in many areas. Two clinical psychologists who had been providing a clinical service within an urban teaching hospital to young people from a large geographical area (up to 300 km away), changed their model to include providing a monthly service, traveling to five centers in outlying areas, in line with a combined shifted out-patient/ liaison-consultation model. They offered a day that combined training in the identification of problems and intervention techniques for frontline workers (e.g., primary care, school and psychiatric nurses, social workers and teachers), with their own clinical assessment of more complex cases. As with the other models described above across different national contexts, this again confirms that it is feasible to improve integration of services, but research is required to assess whether integration is clinically and cost-effective, and whether these models of service delivery lead to improved access to services, clinical outcomes and user satisfaction. Large-scale improvement in access to interventions for child and adolescent mental health problems through integration with primary services will require commitment of resources to build capacity. A global lack of mental health policy pertaining to children and adolescents contributes to the barriers to service development, in spite of the significant progress made in policy development over the last 10 years (Shatkin & Belfer, 2004). This should include attention to research, professional training and public education, in conjunction with service developments based on locally determined, culturally sensitive needs assessment (Rahman, Mubbashar, Harrington, & Gater, 2000). Intersectoral collaboration across health, education and social care is important across settings, whether in poorly or welldeveloped systems, with priorities for development according to patterns and profiles of disorder in relation to available resources and the growing evidence base for interventions. Future Directions It may be expected that in future years there will be a continuing impetus to enhancing attention to the mental health PRIMARY HEALTH CARE PSYCHIATRY 1175 9781405145497_4_072.qxd 29/03/2008 03:00 PM Page 1175

of children and adolescents in primary care by the following developments: • A better appreciation by the public and by health service providers of child psychiatric disorders such as ADHD and depression, with parallel increasing expectations of assistance and knowledge about these from professionals in primary care; • Clearer identification of primary care staff with a special interest in child and adolescent mental health; • More active “therapeutic identification” of child and adolescent mental health problems by primary care professionals, with the development of setting-appropriate information and well-informed advice providing techniques for children and families and halting the increase in the primary prescription of psychotropic medication in primary care; • More attention to the appropriate management of functional somatic symptoms in the primary care setting; • Development of general practice therapist posts to implement setting-appropriate therapeutic techniques; and • Further development of liaison posts with clearer areas of expertise and enhanced training to help bridge the gap between primary and specialist mental health services. On the research field, it may be expected that there will be further: • Systematic description of innovative mental health informed interventions in countries with developing health services; • In countries with better developed services, a trend for more evaluation of new setting-appropriate techniques for specific disorders using simple before–after controlled designs, followed by larger evaluations of complex interventions with the progressive elucidation of the more active treatment ingredients; • Evaluation of new liaison services through the development of adequate outcome measures; and • Evaluation of training to increase primary care workers’ awareness, knowledge and skills in relation to child and adolescent mental health problems. References American Academy of Child and Adolescent Psychiatry. (1998). Practice parameters for the assessment and treatment of children and adolescents with depressive disorders. 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How much child psychiatry does a general practitioner do? Journal of the Royal College of General Practitioners, 28, 621–626. Bernard, P., Garralda, E., Hughes, T., & Tylee, A. (2006). Evaluation of a teaching package in adolescent psychiatry for general practitioners. Education for General Practice, 10, 21–28. Boerma, W. G. W. (2006). Primary care in the driver’s seat? Organisational reform in European primary care. Buckingham: Open University Press. Borowsky, I. W., Mozayeny, S., & Ireland, M. (2003). Brief psychosocial screening at health supervision and acute care visits. Pediatrics, 112, 129–133. Bower, P., Garralda, E., Kramer, T., Harrington, R., & Sibbald, B. (2001). The treatment of child and adolescent mental health problems in primary care: A systematic review. Family Practice, 18, 373–382. Bower, P., Macdonald, W., Sibbald, B., Bradley, S., Garralda, E., Kramer, T., et al. (2003). 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1180 Genetic Counseling and the Role of the Genetic Counselor Genetic counseling is the process of requesting and receiving information on genetic disorders, risk and possible interventions for oneself and one’s relatives. Genetic counseling focuses on providing clients with information that will allow them to make informed decisions with regard to family planning and health care (Kelly, 1986). People presenting for genetic counseling may not have a health problem at the time of presentation. Although the term “counseling” is used, it differs from mental health counseling in being brief (usually 1–3 visits) and focusing on the communication of fact, with limited exploration of individual factors that may alter decisions about management of the information given. Nature of Genetic Counseling in Child Psychiatry The majority of child psychiatric disorders are complex in their inheritance in that multiple genes and environmental factors both influence the occurrence of disorder (see chapter 23). Susceptibility genes are usually common variants rather than rare mutations and co-act with environmental risk factors, which may also be common variations in experience or exposure. Single gene mutations, chromosomal anomalies and submicroscopic abnormalities do occur, predominantly but not exclusively in global intellectual disability, and these are important to be aware of, as intellectual disability may first be identified in child mental health services (see chapter 24). Genetic counseling in complex disorders raises a number of issues that usually do not apply in these other contexts. The first is that of deciding whether or not the disorder is present. A hallmark of many common complex disorders is the absence of a clear threshold between normality and disorder, whether this distinction is made by number or type of symptoms, degree of impairment, response to treatment or any of the other methods used in diagnostic classification systems. Most studies of recurrence risk of disorder start with probands who unambiguously meet full diagnostic criteria. Where the affected family member demonstrates milder symptoms or an atypical presentation, the genetic counselor must decide whether this person is “affected” with the full condition. For many psychiatric disorders, genetic liability confers a spectrum of abnormalities. For example, in autism, co-twins of individuals with autism may have autistic-like social and cognitive impairments that do not reach the diagnostic threshold for childhood autism (Bailey, Le Couteur, Gottesman et al., 1995). However, it does not follow that all individuals showing the broader autistic phenotype have the full genetic liability for autism. Thus, it is not currently known how to estimate the risk of autism in family members of more mildly affected individuals. Disorder boundaries are also unclear in relation to psychiatric comorbidity. The available evidence suggests that this may often be because of genetic influences that increase liability nonspecifically for several disorders (i.e., that are risk factors for both disorders; Kendler, Heath, Martin, & Eaves, 1987; Silberg, Rutter, Meyer et al., 1996). Such findings raise more questions than they answer for genetic counseling. For example, the finding of shared genetic risk factors between symptoms of attention deficit/hyperactivity disorder (ADHD) and conduct disorder highlights that some families with children with ADHD are also at risk of having children with conduct disorder, but at present there are no methods for identifying the different risks. In some cases, such as ADHD, some of the susceptibility genes appear to have been identified, while in others, such as autism, none are yet confirmed. However, even where one or more susceptibility genes are identified, it is not currently possible to predict with any degree of certainty who will develop the disorder. To date, most genetic testing has occurred where the presence of a risk genotype is strongly associated with development of the disorder. The costs and benefits of testing for susceptibility genes that lead to relatively small alterations in risk have not yet been fully explored but it is almost certain that the negative effects will have a greater influence than is the case when testing for Mendelian disorders. A further challenge with respect to complex disorders is how to incorporate environmental risk factors into counseling. The extent to which environmental risk is important will vary across disorders and may be underestimated in classic behavioral genetic studies, which assume that genetic and environmental factors act independently rather than in concert. Empirical recurrence rates are agnostic to the origin of familiality and are also helpful because they are easily understood concepts. However, empirical recurrence risks in psychiatry are disorderbased and do not take account of etiological and clinical heterogeneity and comorbidity so that they may Genetic Counseling 73 Emily Simonoff 9781405145497_4_073.qxd 29/03/2008 03:00 PM Page 1180 Rutter’s Child and Adolescent Psychiatry, 5th Edition, Edited by M. Rutter, D. V. M. Bishop D. S. Pine, S. Scott, J. Stevenson, E. Taylor and A. Thapar © 2008 Blackwell Publishing Limited. ISBN: 978-1-405-14549-7

be imprecise for any individual. Even where environmental risk factors have been identified, it is not always clear how to use them within genetic counseling, either because the risk factor is inherently undesirable (e.g., child maltreatment) or difficult to avoid (e.g., life events). In other cases, knowledge of specific risk may be helpful, as in the interplay between catechol-O-methyltransferase (COMT) genotype and cannabis use (Caspi, Moffitt, Cannon et al., 2005). With the exception of disorders caused by single gene and chromosomal anomalies, the nature of genetic counseling for psychiatric disorders is probabilistic rather than based on predicting binary outcomes (affected or disorder-free). Whereas genetic counseling has always included situations in which there is uncertainty about affected status, these are decreasing for Mendelian disorders and chromosomal anomalies but not for complex disorders. Genetic counseling for complex disorders is likely to remain probabilistic even as susceptibility genes and environmental risk factors are identified. An ongoing challenge will be to communicate probabilistic risk and uncertainties in accurate and helpful ways. Social Aspects of Genetic Counseling The explosion in requests for genetic counseling has fuelled interest in alternative modes of delivery. Controlled trials comparing the outcomes of different methods of delivering genetic counseling are just beginning and include group-based counseling prior to prenatal diagnostic screening (Hunter, Cappelli, Humphreys et al., 2005), the use of structured presentations (Baker, Uus, Bamford, & Marteau, 2004), interactive computerbased systems and CD-ROMs to deliver basic information (Green, Peterson, Baker et al., 2005) and telemedicine (Coelho, Arnold, Nayler, Tischkowitz, & MacKay, 2005). Early results suggest these strategies are largely equally effective. These evaluations highlight the diversity of outcome measures employed, and uncertainty about what outcome measures are most appropriate. Outcome measures have included client satisfaction, enhanced knowledge of genetics and individual risk, anxiety reduction, help with decision-making and, where applicable, undergoing medical investigations and interventions. Perhaps the most important outcome to measure is whether clients can make informed choices, “based upon relevant knowledge, consistent with the decision-maker’s values and behaviorally implemented” (Broadstock, Michie, & Marteau, 2000). In some situations, the results of genetic testing may appropriately increase anxiety, such as where it has led to identification of the cardiac disorder of long QT syndrome, with its increased risk of sudden death (van Langen, Hofman, Tan, & Wilde, 2004); here the outcome of choice may be compliance with recommended treatment. Because genetic counseling has been considered optional, the health inequalities related to differential uptake have not previously been considered. However, racial, ethnic and cultural diversity in genetic counseling affects uptake and use of genetic counseling. There are also racial, ethnic and sociodemographic differences in personal knowledge about genetic risk, perceived genetic risk and knowledge about family history more generally (Dormandy, Michie, Hooper, & Marteau, 2005; Hall & Olopade, 2005), with women from ethnic minority and sociodemographically disadvantaged backgrounds being less likely to take up prenatal screening for Down syndrome or counseling for themselves in relation to breast cancer (Armstrong, Micco, Carney, Stopfer, & Putt, 2005). This difference is similar to that in the uptake of preventive health care more generally. The results of genetic counseling can produce a conflict between the individual patient wishing to maintain confidentiality about results and the potential harm caused by not alerting other family members to their risk. While guidelines vary in the emphasis given to maintaining patient confidentiality versus informing relatives, all emphasize the importance of exploring such issues prior to genetic testing and of working with patients to help them communicate with family members (American Society of Human Genetics, 1998; Council on Ethical and Judicial Affairs of the American Medical Association, 2004; Taub, Morin, Spillman et al., 2004). There is ongoing concern about the use that health insurance may make of the results of genetic testing. Tasks of the Genetic Counselor Professionals from different backgrounds are involved in genetic counseling: clinical geneticists (medical doctors with specialist training), non-medical geneticists, genetic counselors (who come from a range of backgrounds but undertake postgraduate training in genetic counseling) and medical and other health professionals with an interest in particular genetically influenced disorders. With respect to child psychiatric disorders, counseling may be undertaken in the mental health setting or by referral to clinical genetics with the option of holding joint clinics. Genetic counselors vary widely in their experience of counseling for genetically complex conditions and psychiatric disorders in particular. Professionals giving genetic counseling must have adequate knowledge and skills and this should dictate the choice of setting. Because genetic counseling deals with a wide range of situations, the tasks for the counselor vary. Diagnosis of Genetic Disorders Geneticists are called upon to help make a diagnosis of a genetic disorder, either prenatally or later. Within child psychiatry, this most often occurs in the context of intellectual disability or developmental delay where investigation for genetic causes forms part of an overall investigation for etiological causes, in which general population studies suggest approximately 40– 50% will have an identifiable cause (Srour, Mazer, & Shevell, 2006). The extent to which genetic investigation should be undertaken depends in part on severity of intellectual disability, family history, physical examination and the pattern of symptoms. A history of multiple affected family members or consanguinity always warrants further investigation, as do findings on physical examination suggestive of a specific disorder or GENETIC COUNSELING 1181 9781405145497_4_073.qxd 29/03/2008 03:00 PM Page 1181

multiple dysmorphic features. Severe intellectual disability (IQ < 50) is more likely to be associated with identifiable medical causes. There is no firm consensus on when and how to investigate genetic causes of intellectual disability but routine chromosomal analysis is generally supported with either structural abnormalities or aneuploidy occurring in approximately 13% with moderate to severe intellectual disability and approximately 4% with mild to moderate intellectual disability (van Karnebeek, Scheper, Abeling et al., 2005). There is much interest in investigations to detect microscopic deletions or duplications, using either fluorescence in situ hybridization (FISH) for telomeric rearrangements or comparative genomic hybridization (CGH) array, which may be abnormal in 5–10% of individuals with intellectual disability (Sharkey, Maher, & FitzPatrick, 2005). Clinicians should remain cautious about their use and interpretation because of inadequate population-based studies to determine the base rate for such findings and uncertainties about the distinction between normal variation and abnormality. Factors supporting an etiological role for cytogenetic and submicroscopic genetic variations include previous reports of a similar clinical picture associated with the abnormality and either a failure to find the abnormality in the parents (de novo mutation) or the abnormality segregating with the clinical characteristics within the family. Clinical characteristics associated with submicroscopic abnormalities include: positive family history of intellectual disability, prenatal growth retardation, postnatal growth abnormalities (including tall and short stature and micro- and macrocephaly) and dysmorphic features (de Vries, White, Knight et al., 2001). Other investigations of intellectual disability are more focused and usually taken on by clinical geneticists or pediatricians (Cleary & Green, 2005; McDonald, Rennie, Tolmie, Galloway, & McWilliam, 2006; Sharkey, Maher, & FitzPatrick, 2005). Many of the investigations that may be undertaken do not involve a genetic test per se but, if positive, will diagnose a genetic disorder. Many genetic laboratories require evidence that the nature and possible implications of genetic tests have been discussed with patients or parents, but such a requirement is unusual for non-genetic investigations and clinicians must decide whether the genetic implications should be discussed prior to testing. With respect to other child psychiatric disorders, clinicians must be alert to the rare but important instances in which genetic disorders may have a role in exactly the same way that other rare medical causes of psychiatric disorders need to be evaluated. Velocardiofacial syndrome (VCFS) should be considered in early-onset psychosis and Williams syndrome in ADHD and subaverage intelligence (see chapter 24). In general, protocols for investigating genetic causes of child psychiatric disorders do not exist at present and clinicians need to make individual decisions based on the clinical picture, including the presence of other features associated with the genetic disorder. Clinicians should also balance the possible benefits of an etiological diagnosis that may affect reproductive decisions for other family members against the cost of routine testing and the possible anxiety engendered while test results are awaited. An etiological diagnosis may have specific treatment implications and more commonly is helpful in highlighting other features of the genetic disorder, as well as giving patients and families a causal explanation. Pre-conception Counseling for Couples At Risk Couples present for genetic counseling because they believe themselves to be at risk of having a child affected with an intellectual disability or psychiatric disorder. This common genetic counseling situation is covered on p. 1185). Ensuring correct diagnosis in the affected family member is essential and may be difficult if direct examination and availability of contemporaneous records are not possible. It is important to obtain a full family history for both members of the couple, even when the affected person is related only on one side. Genetic testing of the unaffected couple should be considered but undertaken only where there is a specific question. Prenatal Diagnosis The aim of prenatal diagnosis is to detect abnormalities (both genetic and otherwise) at an early stage of fetal development, usually to allow parental choice whether to continue with the pregnancy or, rarely, to allow prenatal intervention. Prenatal diagnosis is considered in disorders resulting in severe disability not open to other treatment options, where there is an accurate diagnostic test and in instances where there is a reasonable chance the pregnancy will be affected (Harper, 1998). The boundaries in relation to what is considered a severe disability are not clear-cut and there is diversity across individuals, cultures and societies. Divergence in opinion is exemplified by the sex chromosome anomalies in which affected individuals frequently have subaverage intelligence and varying degrees of behavioral disturbance (Abramsky, Hall, Levitan, & Marteau, 2001; Ratcliffe, 1999). There has been debate about whether prenatal diagnosis should only be undertaken if couples wish to terminate an affected pregnancy. In population prenatal screening for common genetic disorders, such as the triple test for Down syndrome, it is common for the testing to be undertaken without ascertaining the couple’s view about continuing an affected pregnancy. Prenatal diagnosis for severe late-onset disorders such as Huntington disease evokes controversy as many clinicians believe parents have the right to terminate an affected pregnancy but highlight that otherwise current guidance discourages testing of children for late-onset disorders until they are able to give consent (Duncan, Foddy, & Delatycki, 2006). Prenatal diagnosis is possible for chromosomal abnormalities, many Mendelian disorders and for those caused by identified microscopic deletions and/or duplications, but these are relevant only rarely in child psychiatric disorders. In child psychiatric disorders in which there is an excess of affected males but no specific prenatal diagnostic tests, the question of female sex selection arises. This is an imprecise method of altering the risk of an affected child as the majority of male offspring will be unaffected and female offspring may develop the disorder. CHAPTER 73 1182 9781405145497_4_073.qxd 29/03/2008 03:00 PM Page 1182

Pre-implantation Genetic Diagnosis Pre-implantation genetic diagnosis (PGD) involves genetic analysis of the embryo in vitro and selection for implantation only of those appearing disease-free. PGD has been used to detect mutations responsible for Mendelian disorders in the embryos of at-risk couples (Sermon, Van Steirteghem, & Liebaers, 2004), and to screen for chromosomal abnormalities in the embryos of couples at greater risk or with a history of multiple miscarriages, infertility for unknown reason or male factor infertility, or in vitro fertilization (IVF) failures. In non-disclosure PGD, couples at risk themselves for a lateonset disorder, such as Huntington disease, can opt for the selection of disease-free embryos without knowing themselves whether they carry the mutation. Parents have also selected embryos on the basis of their HLA type, to provide stem-cell donation for a sick sibling (Devolder, 2005). In the latter instances, there has been considerable ethical debate about the circumstances in which such methods should be applied and the practice is determined in some but not all countries by regulatory authorities (Takeshita & Kubo, 2004). Because embryo selection is perceived as less drastic than termination of pregnancy, it may be used in the future to select in relation to susceptibility genes, which increase the risk of, but do not determine the presence of, complex disorders. Presymptomatic Testing Molecular genetic tests allow detection of mutations that will lead to a disorder in currently healthy persons. Such presymptomatic testing should be differentiated according to whether there are therapeutic implications of a positive test result. In some conditions, including the hereditary cancers, a positive presymptomatic result has direct implications for screening and surveillance while a negative test result obviates this need. For other conditions, such as Huntington disease, there are at present no treatment consequences of a positive result and the reasons for requesting testing are more complex. The uptake of presymptomatic testing has, not surprisingly, varied according to treatment implications of a positive result. Uptake for Huntington disease testing has been approximately 10–20% (Crauford, Dodge, Kerzin-Storrar, & Harris, 1989; Quaid & Morris, 1993), compared with approximately 50% for hereditary breast cancer, where the role of early treatment is uncertain, and 80% for familial adenomatous polyposis, for which early surgical intervention has a significant health impact (Harper, 1998). With regard to presymptomatic testing of children, current guidance indicates that children should not be tested for disorders for which there are no therapeutic consequences, until they are of an age to give consent themselves, unless there is demonstrable medical or psychosocial benefit (Clarke et al., 1994). Non-geneticists are more likely to offer presymptomatic and carrier testing of children at parental request; one commonly stated reason for testing was to reduce parental anxiety (Clarke, 1994). Although the impact has not been examined in children, studies of adults tested for late-onset disorders failed to find long-term anxiety reduction (Braidstock et al., 2000). In relation to diseases such as cancers in which a positive test result may alter the screening practice, current guidelines propose that testing should be permitted at the earliest age of onset (Kodish, 1999). In some cases, this delays testing until an age at which children can participate in the consent process. This position stems from the bioethics paradigm adopted by most genetic counselors which places pre-eminence on the autonomy of the individual (child) over that of the wider social network (family), but such a view ignores the broader psychological and cultural diversity in which family needs could take precedence over individual autonomy (McConkie-Rosell & Spiridigliozzi, 2004). Child psychiatrists and their colleagues may be called upon to advise on the child’s ability to give informed consent to genetic testing or upon family issues thrown up by the genetic disorder and testing. Evaluating the child’s ability to consent follows the same principles as those for any medical treatment but account should be taken of longer-term consequences of genetic testing such as discrimination, the impact on wider family relationships and that, unlike some treatments, once testing has been undertaken, the information cannot be withdrawn. Presymptomatic assessment is beginning to include testing of susceptibility genes for complex disorders. The preliminary results suggest that inclusion of genetic data in risk results, in comparison to similar risks based only on empirical recurrence, reduces anxiety and risk perception in those receiving a lowrisk result (LaRusse, Roberts, Marteau et al., 2005) and does not alter risk perception in those receiving a high-risk genotypic result (Marteau, Roberts, LaRusse, & Green, 2005). Such presymptomatic testing is theoretically feasible for susceptibility genes in some child psychiatric disorders but is not routinely offered at present. Carrier Detection A carrier is someone who carries a single copy of a genetic mutation and is healthy at the time of study. With the exception of carriers of late-onset dominant disorders, carrier status is therefore of importance primarily for reproductive planning. Carrier status is a concern for families with affected members where healthy individuals are uncertain whether they may pass on the disorder to their offspring. The issues in relation to testing of minors overlap with those raised by presymptomatic testing (McConkie-Rosell, Spiridigliozzi, Rounds et al., 1999). The benefits could include a reduction in parental concerns regarding the child’s status, a longer time for the child and family to accommodate to the knowledge, an understanding of the genetic risks prior to any unplanned pregnancy and to consider alternatives regarding reproductive planning (McConkie-Rosell, Finucane, Cronister et al., 2005). However, the drawbacks include the loss of the child’s autonomy, possible labeling and differential (real or perceived) treatment of siblings according to genetic status, potential effects on the child’s self-concept and adverse effects on their ability to form future relationships, and possible discrimination (e.g., from insurance companies). The extent to which self-concept and future relationships are adversely affected by genetic testing of minors is largely unknown. Although parents with one GENETIC COUNSELING 1183 9781405145497_4_073.qxd 29/03/2008 03:00 PM Page 1183

affected child may press to have other children tested for carrier status, current recommendations state this should be resisted until the children are of an age to give informed consent themselves (Clarke, Fielding, Kerzin-Storrer et al., 1994). An effect of waiting until children are able to give informed consent is that uptake of testing may be lower. In cystic fibrosis, where genetic carrier testing has been available for some years, uptake amongst siblings of affected people has been poor. Several reasons have been cited, including poor communication with parents regarding genetic issues and feeling that affected siblings would have difficulty accepting their decision to be tested (Fanos & Johnson, 1995a). The finding that beliefs about carrier status were not influenced by educational or income level suggests that emotional factors may play an important part in attitudes about screening (Fanos & Johnson, 1995b). Population Screening Population screening involves identifying those with or at risk of having offspring with genetic disorders amongst the general population. Population screening aims to detect diseases for which early treatment improves prognosis and to identify untreatable severe disorders in fetuses to allow couples to make informed reproductive decisions. Population screening may occur at any stage from the prenatal period to later life and now includes testing for common genetic variants that may influence disease, both in a Mendelian pattern, such as hypercholesterolemia associated with low-density lipoprotein receptor abnormalities and as a susceptibility allele for a complex disorder, such as apolipoprotein E4 in late-onset Alzheimer’s disease. Cascade screening is an intermediate strategy involving systematic contact of more distant at-risk family members with the offer of testing. Genetic population screening differs from other forms of population screening because it detects disease of genetic origin, for which there may be implications for other family members. Unlike individual genetic testing, in population screening clients may have little knowledge of the disorder, raising uncertainty about the degree of informed consent. At present, population screening with respect to child psychiatric disorders is limited to conditions causing significant intellectual disability such as phenylketonuria and Down syndrome. There is debate over the merits of population screening for fragile X syndrome. As one of the most commonly inherited forms of intellectual disability, detection of the carrier state in mothers has the potential to promote greater reproductive choice. Current recommendations are that prenatal carrier screening for fragile X should be undertaken only in those at known risk (Sherman, Pletcher, & Driscoll, 2005). However, popular opinion does not fully support this strategy; women attending a prenatal diagnostic clinic for other purposes were strongly in favor of global screening (Fanos, Spangner, & Musci, 2006) as were parents of children affected with the disorder (Skinner, Sparkman, & Bailey, 2003), raising the question of who should decide which tests are available. Multiplex genetic tests assess a person’s genotype for a range of different genes, much in the way current laboratory tests examine a range of blood chemistries. Such tests may provide the simplest and least expensive way to assess risk for one condition, but they may also detect variations in other genes for which testing was not intended and no consent was obtained. Pharmacogenomics Pharmacogenomics is the study of the variability in genes relevant to disease susceptibility and drug response (see chapters 16 and 23). Genetic variations influence drug response in three ways: 1 Affecting the processing of drugs by the body (pharmacokinetics); 2 Modifying the proteins that are targeted by drugs (pharmacodynamics); and 3 Altering the risk of acquiring certain diseases. In psychiatry, pharmacogenomics holds promises especially for more effective, individually tailored treatments with reduced adverse effects. However, a range of ethical concerns are raised, amongst them the concern that more personalized treatments may also increase health inequalities and jeopardize patient confidentiality and informed consent (Breckenridge, Lindpaintner, Lipton et al., 2004; Nuffield Council on Bioethics, 2003; van Delden, Bolt, Kalis, Derijks, & Leufkens, 2004). Counseling Prior to Adoption Requests for pre-adoption genetic counseling occur when the biological parents are believed to have a genetically influenced disorder, especially as mental illness in parents is a common reason for childhood adoption. In considering such requests, one needs first to determine whether the individual requesting the information has the legal status to do so. In considering the child’s rights, one needs to balance the abrogation of his or her right to decide whether or not to be the subject of genetic counseling against the possibility that, without genetic information, prospective parents may decline the adoption, which may not be in the child’s interests. Alternatively, the results of genetic information may reverse a positive decision from prospective parents. In addition, one needs to consider the rights of adoptive parents to accurate information about the child’s background and what problems they are likely to encounter in rearing the child. Although genetic counseling for potential adoptees is currently mainly requested in relation to severe mental illness in parents, the considerations in relation to which disorders should be the focus of genetic counseling (see p. 1185) apply here as they do to couples making enquiries on their own behalf. Genetic counseling may be hampered by vague information regarding biological parents, as giving accurate advice requires specific information about both parents. Where parental medical records are available, it is essential to ensure that these have been obtained through legal and ethical channels. When it is impossible to obtain adequate background history, the information imparted needs to reflect this uncertainty and should include the range of plausible levels of risk. Should genetic testing of a child be considered, an independent advocate for the child should be involved in the decision-making. 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adopted children might be informed about known genetic risks from their birth parents at age 18, when they are able to request knowledge of the identity of their birth parents; otherwise, adopted children are at a disadvantage with respect to knowledge of their potential genetic risks (Nuffield Council on Bioethics, 1998). Role of the Child Mental Health Specialist in Genetic Counseling The considerable variation in uptake of genetic screening and counseling according to racial/ethnic and sociodemographic groups (Hall & Olopade, 2005) suggests it may constitute an area of a health inequality. The diagnosis of a disorder associated with a strong genetic risk places a responsibility on the professional to apprise family members of this risk and to assist with the provision of appropriate genetic counseling and investigation if desired. This requires the professional to have a good general understanding of the nature and importance of genetic risk factors. Only those able to interpret the results of a genetic test should order the investigation (Taub, Morin, Spillman et al., 2004), so that referral to a geneticist or a joint consultation may be most appropriate. Practical Aspects of Genetic Counseling Referral for Genetic Counseling Almost all child psychiatric disorders show some degree of genetic risk (Rutter, Silberg, O’Connor, & Simonoff, 1999), but this does not mean genetic counseling is necessarily appropriate. First, the quality and precision of the evidence in relation to genetic factors require consideration. The heritability of the disorder, the proportion of individual variation that is accounted for by genetic factors and the recurrence risk in relatives of those affected should be considered. Although the latter is the figure most directly relevant to families, it fails to distinguish genetic and environmental causes of familial aggregation. For many child psychiatric disorders, the current literature contains widely varying findings that make it impossible to give precise information to families. Another practical problem is that the empirical recurrence risk may be known for offspring and siblings, but not for other relationships. A second consideration is the extent of impairment or disability caused by the problem. Traits such as emotionality and sociability are strongly genetic but infrequently impairing in their own right. Whereas professionals should not impose their view as to which traits or disorders warrant genetic counseling, issues of severity, impairment and treatability should be considered by families and professionals alike (Nuffield Council on Bioethics, 2002). Autism is the child psychiatric disorder (other than intellectual disability) for which there is the strongest case for formal genetic counseling and it is therefore the template for what follows. Although formal genetic counseling may not be appropriate for all other child psychiatric disorders, it may be helpful for parents to know when genetic influences have a role in their child’s difficulties, particularly if they have inappropriately blamed themselves or other causes for the problem. Twin studies of autism show a high heritability of the disorder (Bailey, Le Couteur, Gottesman et al., 1995) and family studies concur that the sibling recurrence risk is 5–6% for autism and pervasive developmental disorder (Rutter, Bailey, Simonoff, & Pickles, 1997). Although population rates of autism have increased (Baird, Simonoff, Pickles et al., 2006), there is at present no evidence to suggest a similar change in the sibling recurrence risk. Autism is life-long, essentially incurable, severely impairing and creates a heavy burden on families. In the majority of cases, inheritance will be complex and is likely to involve a number of susceptibility genes and as yet unspecified environmental or random factors (see chapter 46). Although families may need some time to adjust to the diagnosis, it is important that they have access to genetic counseling before planning further children. If genetic counseling is to be offered by the clinician looking after affected family members, such counseling is best undertaken in an appointment specifically designated for this purpose. Assessment Genetic counseling should commence by confirming the diagnosis in the proband. The challenge of this task varies enormously depending on the information available, but is a necessary first step to ensure that genetic counseling is given for the correct disorder. This may raise at an early stage family issues of communication regarding illness and may delay the more formal aspects of genetic counseling until the necessary information has been obtained. In rare cases it is impossible to obtain adequate diagnostic information. Approaches vary but the clinician should usually go ahead with genetic counseling having apprised the clients of the uncertainty regarding diagnosis. Consideration is given to etiological factors that may alter recurrence risk. In autism, 5–10% of cases are caused by a recognized medical disorder and these should ideally be excluded in the proband as they will alter the recurrence risk. The most common medical disorders causing autism are tuberous sclerosis and fragile X (Rutter, Bailey, Simonoff et al., 1997) and, in such instances, the relevant disorder for genetic counseling is the underlying medical condition. Where cytogenetic or microscopic chromosomal abnormalities are present, there may be less certainty regarding their etiological role and a clinical genetics opinion should be sought, as well as testing other family members. Rare environmental causes in the proband should also be excluded. Congenital rubella is the most common infectious cause of autism. There has been much debate as to whether association of obstetric complications with autism (usually with milder levels of adversity) indicates a causative role (Goodman, 1990); the further association of obstetric complications with congenital anomalies suggests that abnormal development in the fetus may be responsible for the obstetric complications (Bailey, Le Couteur, Gottesman et al., 1995; Bolton, Murphy, GENETIC COUNSELING 1185 9781405145497_4_073.qxd 29/03/2008 03:00 PM Page 1185

Macdonald et al., 1997). However, it is likely that severe perinatal adversity, as well as other causes of brain injury, can cause autism. Where an “environmental” cause of brain injury is the likely cause of autism, the recurrence risk may be much lower and possibly the same as for the general population. In gathering information, a systematic family history is essential. Multiple miscarriages and consanguinity should be excluded. In determining whether there are other family members affected, enquiry should include a broad range of psychiatric and neurological disorders. If a pattern suggestive of Mendelian inheritance emerges, it may be appropriate to review the original diagnosis and consider whether further investigation is required. In multifactorial disorders where heavier family loading is thought to indicate greater disease liability within the family and therefore predict a higher recurrence risk (Carter, 1976; Falconer, 1981), such information can be used to alter the recurrence risk information given to families. In practice, there are few empirical data from which to vary recurrence risk for any of the child psychiatric disorders. It is important to enquire about both sides of the family even when the proband is related to only one member of the couple. In genetically complex disorders, individual susceptibility genes are likely to be common and the risk for a couple seeking counseling depends upon the genetic contribution of each side. Family history should also take account of maternal and paternal age, as there may be a risk of chromosomal disorders that have not been considered and should note other disorders that may place the couple at increased risk of having a child with a genetic disorder. Communication When families attend for genetic counseling, it is essential to clarify at the outset the questions they wish to address. It is helpful to find out who has sought the referral and, if not the family, how they view it. A small minority of families do not agree with the diagnosis; without addressing this first, genetic counseling is unlikely to be helpful. Clients may have additional questions about the risk for other family members; the usual policy is to give specific counseling only to the couple attending the clinic. A further question for families may be whether there was a causal role of environmental factors. Families may wish to know whether there are any measures they can take to reduce the chances of having an affected child. In discussing risk, it is important to clarify the clinical spectrum of the disorder. With autism, this includes the broader phenotype of speech and language delay, literacy problems and social eccentricities. Although these are substantially more common, they are also much less impairing and this is important to emphasize to families (Rutter, Bailey, Simonoff et al., 1997). Couples may be preoccupied with the risk of the disorder for which they have sought counseling and it can be helpful to remind them of the general population risk of 1 in 50 infants having a significant mental or physical handicap (Harper, 1998). Couples also find it helpful to compare their personal risk with that of the general population. It is important to ascertain that clients understand the risk information given to them; observational studies have suggested genetic counselors frequently fail to confirm this (Michie, Lester, Pinto, & Marteau, 2005). There is a general view that genetic counseling should be non-directive, making information available to families but not advising them on how to proceed. In actual fact, this may be difficult to achieve. Michie, Bron, Bobrow, and Marteau (1997) found that counselors made an average of 5.8 pieces of “advice” and the same number of “evaluative” comments per counseling session, throwing into question the perception of the counseling process as non-directive. This may not be undesirable; in another study, 80% of clients at risk for having an offspring with a severe disorder reported that they wished to receive an opinion from their genetic counselor on what course of action to take (Furu, Kääriäinen, Sankila, & Norio, 1993). In another study, patients receiving non-directive counseling perceived their risk to be higher than those obtaining more directive counseling, possibly feeling in the former case that the neutral counselor was withholding information (Shiloh & Saxe, 1989). Families receiving the same recurrence risk for a child psychiatric disorder have widely varying opinions of whether the risk is high and may make different reproductive decisions. A great deal of information is exchanged during genetic counseling and it is good practice to write directly to clients following the consultation to summarize the information they have been given. It may be appropriate to offer follow-up sessions to the clients, particularly if there is a large difference in how each member of the couple views the information they have been given. Problems and Limitations in Counseling for Child Psychiatric Disorders With increasing awareness of the role of genetic factors in common disorders, clients make more sophisticated requests of genetic counseling, many of which extend beyond present knowledge. A common difficulty arises when the proband does not fulfill the full diagnostic criteria upon which the relevant genetic studies were based. It is often unclear whether the findings can be generalized to diagnostic variant, subthreshold cases or individuals with other comorbidities. When there are no empirical recurrence risk data for the client’s relationship to the proband, it is necessary to rely on genetic principles showing that for multifactorial disorders, there is a rapid fall-off in recurrence as the genetic relationship becomes more distant, to estimate risk. Whereas it is recognized that genetic heterogeneity will occur even within a homogeneous clinical picture and that the same genetic susceptibility can lead to marked clinical variation (Le Couteur, Bailey, Goode et al., 1996), it is unlikely that this knowledge can be used to modify risk until the molecular genetic basis is better understood. This means the genetic information for individual families is likely to be very imprecise. Families seeking genetic counseling often want a way of knowing in advance whether a child will be affected. In multifactorial disorders, it remains to be seen how precise risk information will become. 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Genetic Testing in Research Contexts In the last two decades, genetic research has increased exponentially and many non-genetic studies have chosen to include a genetic component. The research may be exploratory and without clear implications for participants. Consent is therefore often non-specific, open-ended and not discussed in detail with participants. Frequently, researchers do not expect to obtain findings with clinical implications for the research participant. Research samples are frequently anonymized to ensure confidentiality but there is little information on whether participants fully understand the implications of this. As genetic research becomes increasingly relevant to clinical concerns, it is essential that the framework for consent and conduct is regularly reviewed. Conclusions The rapid pace of advances in psychiatric genetics requires genetic counseling to be flexible in relation to its scope, approach to investigation and conceptualization of disorders. Those delivering genetic counseling will need to communicate effectively with mental health professionals diagnosing and treating disorders to ensure that patients and their families have access to genetic investigation and counseling when it is appropriate. Research on genetic causes of psychiatric disorder must be matched by research on the ethical and social consequences of providing the different aspects of genetic testing and counseling with respect to disorders that show a complex pattern of inheritance. References Abramsky, L., Hall, S., Levitan, J., & Marteau, T. M. (2001). What parents are told after prenatal diagnosis of a sex chromosome abnormality: Interview and questionnaire study. British Medical Journal, 322, 463–466. American Society of Human Genetics. (1998). Professional disclosure of familial genetic information. American Journal of Human Genetics, 62, 474–483. Armstrong, K., Micco, E., Carney, A., Stopfer, J., & Putt, M. (2005). Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. Journal of the American Medical Association, 293, 1729–1736. Bailey, A. J., Le Couteur, A., Gottesman, I., Bolton, P., Simonoff, E., Yazda, E., et al. (1995). Autism as a strongly genetic disorder: Evidence from a British twin study. Psychological Medicine, 25, 63–78. Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP). Lancet, 368, 210–215. Baker, H., Uus, K., Bamford, J., & Marteau, T. M. (2004). Increasing knowledge about a screening test: Preliminary evaluation of a structured, chart-based, screener presentation. Patient Education and Counseling, 52, 55–59. Bolton, P. F., Murphy, M., Macdonald, H., Whitlock, B., Pickles, A., & Rutter, M. (1997). 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