Caprice A. Knapp, PhD

Caprice A. Knapp, PhD

601A Ford Building • University Park, PA 16802 • (352) 281-6231
[email protected]

EDUCATION

Post-Doctoral Fellow, Child Health Services Research, University of Florida, 2005

Doctorate of Philosophy, Economics, University of Florida, 2003

Master of Arts, Economics, University of Florida, 2001

Bachelor of Arts Cum Laude, Economics, University of South Florida, 1999

Bachelor of Science, University of Florida, 1996

RESEARCH

Peer-Reviewed Research (selected)

73. M. Bright, C. Knapp, S. Alford, and M. Hinojosa. (2014). “Adverse Childhood Experiences
and Dental Health in Children and Adolescents.” In Press, Community Dentistry and Oral
Epidemiology, DOI:10.1111/cdoe.12137.

72. S. Vadaparampil, C. Knapp, I. Sehovic, D. Ung, M. Bowman, L. Gonzales, and G. Quinn.
(2014). “Knowledge and Awareness of PGD Among Oncology Nurses.” Journal of Clinical
Medicine, (3):632-645. ISSN 2077-0383.

71. N. Saava, O. Krasko, C. Knapp, S. Fowler-Kerry, J. Downing, and J. Marston. (2014) “How
can we improve pain control in children around the world? Results of an International
Multiprofessional Study.” Pain Medicine, 15(7):1238-9. PMID 24636741.

70. Knapp, C., Madden V., Lane H., Gubernick R., Kairys S., Palaez-Velez- C., Sanders L., and
L. Thompson. (2014). “Congruence Between Staff and Leadership’s Ability to Adapt to Change:

A Study of Pediatric Practices.” Primary Health Care, 4:1. http://dx.doi.org/10.4172/2167-
1079.1000147.

69. Knapp, C., S. Chakravorty, V. Madden, J. Baron-Lee, R. Gubernick, S. Kairys, L. Sanders,
and L. Thompson. (2014). “Assessing Parent Experiences in the Pediatric Medical Home: A
Comparison of Two Instruments.” Maternal and Child Health, PMID 24585412.

68. Knapp C., Quinn, G., Madden, V., Sehovic, I. and J. Baron-Lee. (2014). “Linking Medical
Homes to the Community: A Study of Pediatric Practices in Florida.” Journal of General Practice,
2:2. http://dx.doi.org/10.4172/2329-9126.1000147.

66. Knapp, C., Hinojosa, M., Baron-Lee, J., Curtis, C., and I. Huang. (2014). “Does Decisional
Conflict Differ Across Race and Ethnicity? A Study of Parents Whose Children Have a Life-
Threatening Illness.” Journal of Palliative Medicine, 17(5):559-67. PMID:24720434.

64. Knapp, C., H. Wang, and K. Baker. (2014). “Measuring Quality in Pediatrics: Florida’s Early
Experiences with the CHIPRA Core Measure Set.” Maternal and Child Health, 18(6):1300-7.
PMID 24170507.

63. Knapp, C., S. Chakravorty, V. Madden, J. Baron-Lee, R. Gubernick, S. Kairys, L. Sanders,
and L. Thompson. (2014) “Association Between Medical Home Characteristics and Staff
Outcomes in Pediatric Practices.” Archives of Public Health, 72:36. DOI: 10.1186/2049-3258-72-
36.

61. Thompson, L., E. Meinert, C. Knapp, and K. Baker. (2013) “Chronic Pain as a Barrier to
Pediatric Palliative Care” American Journal of Hospice and Palliative Medicine. Dec 30(8): 764-
7. PMID 23329083.

60. Knapp, C., L. Woodworth, D. Fernandez-Baca, J. Baron-Lee, L. Thompson, and M. Hinojosa.
(2013) “Factors Associated with a Medical Home Among Children with Behavioral Health
Conditions.” Maternal and Child Health Journal. Nov 17(9): 1658-64. PMID 23108741.

59. Rodriguez, S., Campo-Engelstein, L., Quinn, G., Clayman, M., C. Knapp, L. Zoloth, and L.
Emanuel. (2013) “Pathways Toward the Future: Points to Consider for Oncofertility Oversight.”
Journal of Cancer Survivorship, 7(1);140-5.

58. Knapp, C., K. Baker, C. Cunningham, J. Downing, S. Fowler-Kerry, K. MacNamara. (2012)
“Pediatric Palliative Care and the Medical Home.” Journal of Palliative Medicine, 15(6):643-5.

57. Hinojosa, MS, Fernandez-Baca, D, Knapp, C. (2012) “Parental Strain, Parental Health, and
Community Characteristics Among Children with ADHD.” Academic Pediatrics, Nov 12(6):502-
8.

56. Quinn, G., C. Knapp, and D. Murphy. (2012) “Congruence of Reproductive Concerns Among
Adolescents with Cancer and Parents: Pilot Testing an Adapted Instrument.” Pediatrics, 129(4):
e930-6.

55. Hinojosa, MS, Fernandez-Baca, D, Knapp, C. (2012) “Factors Associated with Family-
Provider Partnership Among Children with Attention-Deficit Hyperactivity Disorder.” Journal of
Family Medicine, 44(7):463-70.

54. Knapp, C, V. Madden, D. Button, R. Brown, and B. Hastie. (2011) “Partnerships Between
Psychiatry and Pediatric Palliative Care.” Pediatric Clinics of North America. 58(4):1025-1039.

53. Knapp, C., M. Ranka, and L. Woodworth. (2013) “Educational Outcomes of Adopted
Children.” Adoption Quarterly, May 10:85-96.

52. Quinn, G., C. Knapp, H. Wang, K. Sawcyn, D. Murphy. (2013) “Having Cancer Does Not
Change Wanting A Baby: Healthy Teen Girls Perceptions on Cancer Related Infertility.” Journal
of Adolescent Health, 51(2):164-9.

51. Quinn, G., C. Knapp, T. Malo, J. McIntrye, P. Jacobsen, and S. Vadaparampil. (2012)
“Physicians Undecided Attitudes Towards Posthumous Reproduction: Fertility Preservation in
Cancer Patients with Poor Prognosis.” Journal of Supportive Oncology, 10(4):160-5.

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50. Knapp, C., Hinojosa, M., Baker, K., Huang I., and P. Sloyer. (2013) “Assessing the
Congruence of Transition Preparedness As Reported by Parents and Their Adolescents with
Special Health Care Needs.” Maternal and Child Health Journal, Feb 17(2): 352-8. PMID
22415813.

49. G. Quinn, D. Murphy, C. Knapp, V. Phares, and K. Wells. (2013) “Coping Styles of Female
Adolescent Cancer Patients Faced with Potential or Actual Fertility Loss.” Journal of Adolescent
and Young Adult Oncology, Jun 2(2):66-71.

48. Knapp, C., M. Hinojosa, D. Fernandez-Baca, R. Hinojosa, and L. Thompson. (2012) “Factors
Associated with a Medical Home Among Children with Attention-Deficit Hyperactivity
Disorder.” Maternal and Child Health Journal, Dec 16(9):1771-8.

47. Hinojosa, M., Hinojosa, R., Fernandez-Baca, D., Knapp, C., and L. Thompson. (2012)
“Racial and Ethnic Variation in ADHD, Comorbid Illnesses, and Parental Strain.” Journal of the
Poor and Underserved, Feb;23(1):273-89.

46. Marcu, M, C. Knapp, V. Madden, H. Wang, M. Kaufmann, P. Sloyer, and E. Shenkman.
(2014) “Effect of an Integrated Care System on Utilization for Children with Special Health Care
Needs in Florida.” Maternal and Child Health Journal, Jan 18(1):38-44.

45. Knapp, C, L. Woodworth, M. Wright, J. Downing, R. Drake, S. Fowler-Kerry, R. Hain, and J.
Marston. (2011) “Pediatric Palliative Care Provision Around the World: A Systematic Review.”
Pediatric Blood and Cancer, 57(3):361-8.

44. Knapp, C. and G. Quinn. (2010) “Health Care Provider Perspectives on Fertility Preservation
for Cancer Patients." Cancer Treatment and Research. 156(6):391-401.

43. Knapp, C. and L. Thompson. (2012) “Factors Associated with Pediatric Palliative Care: A
Survey of Pediatricians in Florida and California.” Palliative Medicine, 26(3):268-274.

42. Knapp, C, V. Madden, H. Wang, C. Curtis, P. Sloyer, and E. Shenkman. “Factors that Affect
Decisional Conflict in Pediatric Palliative Care.” International Journal of Palliative Nursing,
16(11):542-547.

41. Knapp, C, G. Quinn, L. Zoloth, and B. Bower. (2011) “Posthumous Reproduction and
Palliative Care.” Journal of Palliative Medicine, 14(8):895-8.

40. Hinojosa, M, Knapp, C, Madden, V, Huang, I, Sloyer, P, E Shenkman. (2012) “Caring for
Children with Life-Threatening Illnesses: Racial and Ethnic Variation in Impact on Family.”
Journal of Pediatric Nursing, 27(5):500-7.

39. Knapp, C., V. Madden, H. Wang, D. Revicki, D. Feeny, C. Curtis, and P. Sloyer. (2012)
“Health Status and Health-Related Quality of Life in an Integrated Pediatric Palliative Care
Program” Journal of Palliative Medicine, Jul;15(7):790-7.

38. Tillman, N., Radonovich, L., and Knapp, C. (2010) “The Effects of HIPAA on Influenza
Research Using Geographical Information Systems” Geospatial Health, 5(1):3-9.

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37. Knapp, C, G. Quinn, and D. Murphy. (2011) “Assessing the Reproductive Concerns of
Adolescents with Cancer: Challenges and Potential Solutions.” Journal of Adolescent and Young
Adult Oncology, 1(1):25-29.

36. Knapp, C., Madden, V., Sloyer, P., and E. Shenkman. (2012) “Effects of an Integrated Care
System on Satisfaction and Quality of Care for Children with Special Health Care Needs.”
Maternal and Child Health Journal, 16(3):579-86.

35. Quinn, G., D. Murphy, C. Knapp, K. Bradley-Klug, K. Sawcyn, and M. Clayman. (2011)
“Who Decides? Decision-Making and Fertility Preservation in Teens with Cancer: A Review of
the Literature:” Journal of Adolescent Health, 49(4):337-46.

34. Knapp, C., Madden, V., Wang, H., Curtis, C., Sloyer, P., and E. Shenkman. (2011)
“Spirituality of Parents Whose Children Are Enrolled in a Pediatric Palliative Care Program.”
Journal of Palliative Medicine, 14(4):437-43.

33. Knapp, C., V. Madden, H. Wang, P. Sloyer, and E. Shenkman. (2011) “Internet Use and e-
Health Literacy of Low-Income Parents Whose Children Have Special Health Care Needs.”
Journal of Medical Internet Research, 29;13(3):e75.

32. Knapp, C., V. Madden, M. Marcu, H. Wang, C. Curtis, P. Sloyer, and E. Shenkman. (2011)
“Information Seeking Behaviors of Parents Whose Children Have Life Threatening Illnesses.”
Pediatric Blood and Cancer, 56(5):805-811.

31. Quinn, G., S. Vadaparampil, K. Lowrey, S. Edison, C. Knapp, O. Bukulmez. (2011) “State
Laws and Regulations Addressing Third Party Reimbursement for Infertility Treatment:
Implications for Cancer Survivors.” Fertility and Sterility, 95(1):72-8.

30. Knapp, C. and V. Madden. (2010) “Conducting Outcomes Research in Pediatric Palliative
Care.” American Journal of Hospice and Palliative Medicine, 27(4):277-81.

29. Knapp, C., Madden, V., Sloyer P., Marcu, M., and E. Shenkman. (2011) “Parents’
Experiences in Choosing a Health Plan for Their Children with Special Health Care Needs.”
Journal of Maternal and Child Health. 15(2):217-224.

28. Knapp, C, V. Madden, D. Button, R. Brown, and B. Hastie. (2010) “Partnerships Between
Psychiatry and Pediatric Palliative Care.” Child and Adolescent Psychiatric Clinics of North
America, 19(2):423-437.

27. Knapp, C., D. Murphy, G. Quinn, V. Madden, and R. Brown. (2010) “Adolescents with Life-
Threatening Illnesses.” American Journal of Hospice and Palliative Medicine, 27(2):139-44.

26. Huang, I., Madden, V., Vadaparampil, S., Quinn, G., Shenkman, E., and C. Knapp. (2010)
“Measuring Quality of Life in Pediatric Palliative Care: Challenges and Potential Solutions.”
Palliative Medicine, 24(2):175-82.

25. Knapp, C., V. Madden, C. Curtis, P. Sloyer, and E. Shenkman. (2010) “Family Support in
Pediatric Palliative Care: How Are Families Impacted by Their Children’s Illnesses?” Journal of
Palliative Medicine, 13(4):421-6.

Knapp, C. 4

24. Knapp, C., Madden, V., Wang, H., Kassing K., Curtis C., Sloyer P., and E. Shenkman. (2011)
“Pediatric Nurses’ Attitudes Toward Hospice and Palliative Care.” Pediatric Nursing, 37(3):121-
128.

23. Knapp, C. (2010) “e-health in Pediatric Palliative Care.” American Journal of Hospice and
Palliative Medicine, 27(1):66-73.

22. Thompson, L., Knapp, C., Feeg, V., Madden, V., and E. Shenkman. (2010) “Pediatricians’
Management Practices for Chronic Pain.” Journal of Palliative Medicine, 27(2):17-8.

21. Quinn, Q., Vadaparampil, S., and C. Knapp. (2010) “Frozen Hope: Patient Perspective on
Decision Making in Fertility Preservation for Women with Breast Cancer.” Journal of Midwifery
and Women’s Health, 55(2):175-80.

20. Baig, A., Knapp, C., Eagen, A., and L. Radonovich. (2010) “Healthcare Worker Views About
Respirator Use and Features That Should be Included in the Next Generation of Respirators.”
American Journal of Infection Control, 38(1):18-25.

19. Knapp, C., V. Madden, P. Sloyer, and E. Shenkman. (2010) “Assessing Non-Response Bias
in Pediatric Palliative Care Research.” Palliative Medicine. 24(3):340-7.

18. Knapp, C., Madden, V., Wang, H., Kassing, K., Curtis, C., Sloyer, P., and E. Shenkman.
(2009) “Effect of a Pediatric Palliative Care Program on Nurses’ Referral Preferences.” Journal
of Palliative Medicine, 12(2):1131-6.

17. Vadaparampil, S., Knapp, C., Malo, T., Friedman, S., and G. Quinn. (2009) “Factors
Associated with Pre-Implantation Genetic Diagnosis among Women Concerned About
Hereditary Breast and Ovarian Cancer.” Genetics in Medicine, 11(10):757-65.

16. Knapp, C., V. Madden, and M. Marcu. (2010) “Factors that Affect Parent Perceptions of
Provider- Family Partnership for Children with Special Health Care Needs.” Maternal and Child
Health Journal, 14(5):742.

15. Knapp, C. and N. Contro. (2009) “Family Support Services in Pediatric Palliative Care.”
American Journal of Hospice and Palliative Medicine, 26(6):476-82.

14. Knapp, C. (2009) “Research in Pediatric Palliative Care: Closing the Gap on What is and is
Not Known.” American Journal of Hospice and Palliative Medicine. 26(5):392-8.

13. Knapp, C., Madden, V., Wang, H., Kassing K., Curtis C., Sloyer P., and E. Shenkman. (2009)
“Pediatric Nurses’ Knowledge of Palliative Care in Florida: A Quantitative Study.” International
Journal of Palliative Nursing 15(9):432-39.

12. Knapp, C., Madden, V., Wang, H., Curtis C., Sloyer P., and E. Shenkman. (2009) “Music
Therapy in an Integrated Pediatric Palliative Care Program.” American Journal of Hospice and
Palliative Medicine. 26(6):449-55.

11. Thompson, L., Knapp, C., Nakashi, J., Guinta, N, Saliba, H. and E. Shenkman. (2009) “Effect
of Insurance on Satisfaction and Family-Centered Care for Children with Special Health Care
Needs.” Pediatrics 124:S420-27.

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10. Knapp, C., Huang, I., Madden, V., Vadaparampil, S., Quinn, G., and E. Shenkman. (2009)
“An Evaluation of Two Decision Making Scales for Children with Life-Limiting Illnesses.”
Palliative Medicine, 23(6):518-25.

9. Knapp, C., L. Thompson, V. Madden, and E. Shenkman. (2009) “Paediatricians’ Perceptions
on Referrals to Pediatric Palliative Care.” Palliative Medicine, 23(5):418-24.

8. Knapp, C., E. Shenkman, M. Marcu, V. Madden, and J. Terza. (2009) “Pediatric Palliative
Care: Describing Hospice Users and Identifying Factors Attributed to Differences in Hospice
Expenditures.” Journal of Palliative Medicine, 12(3):223-29.

7. Huang, I., L. Thompson, Y. Chi, C. Knapp, D. Revicki, M. Seid, and E. Shenkman. (2009)
“The Linkage Between Pediatric Quality of Life and Health Conditions: Establishing Clinically
Meaningful Cutoff Scores for the PedsQL.” Value in Health. 12(5):773-81.

6. Thompson, L., C. Knapp, V. Madden, and E. Shenkman. (2009) “Pediatricians’ Perceptions of
and Preferred Timing for Pediatric Palliative Care.” Pediatrics, 123(5):777-782

5. Knapp, C., V. Madden, J. Marston, R. Midson, A. Murphy, and E. Shenkman. (2009)
“Innovative Pediatric Palliative Care Models in Four Countries.” Journal of Palliative Care,
25(2):56-60.

4. Knapp, C., L. Thompson, B. Vogel, V. Madden, and E. Shenkman. (2008) “Developing a
Pediatric Palliative Care Program: Addressing the Lack of Baseline Expenditure Information.”
American Journal of Hospice and Palliative Medicine, 26(1): 40-46.

3. Knapp, C., V. Madden, C. Curtis, P. Sloyer, I. Huang, L. Thompson, and E. Shenkman. (2008)
“Florida’s Partners in Care: Together for Kids Pediatric Palliative Care Model.” Journal of
Palliative Medicine. 11(9):1212-19.

2. Huang, I., E. Shenkman, W. Leite, C. Knapp, L. Thompson, and D. Revicki. (2009)
“Agreement Was Not Found in Adolescents’ Quality of Life Rated by Parents and Adolescents.”
Journal of Clinical Epidemiology. 62(3):337-46.

1. Shenkman, E., C. Knapp, D. Sappington, B. Vogel, and D. Schatz. (2007) “Persistence of High
Health Care Expenditures among Children in Medicaid.” Medical Care Research and Review.
64(3):304-30.

Book Chapters
Quinn, Q., C. Knapp, and D. Murphy. “The Birds and the Bees and the Bank: Talking With
Families about Future Fertility amidst a Cancer Diagnosis" Oncofertility: Reflections from the
Humanities and Social Sciences. Eds. Woodruff, T., Zoloth, L., Campo-Engelstein, L., and S.
Rodriguez. New York: Springer Press.

Knapp, C., G. Quinn, L. Woodworth, and D. Rapalo. “Patient Provider Communication and
Reproductive Health.” Reproductive Health and Cancer in Young Adults. Eds. Quinn, G., and S.
Vadaparampil. Springer Press.

Knapp, C. and G. Quinn. “Health Care Provider Perspectives on Fertility Preservation for Cancer
Patients." Oncofertility: Reflections from the Humanities and Social Sciences. Eds. Woodruff,
T., Zoloth, L., Campo-Engelstein, L., and S. Rodriguez. New York: Springer Press.

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Lowe, P., C. Curtis, B. Greffe, C. Knapp, and E. Shenkman. “Children’s Hospice International
Program for All-Inclusive Care for Children and Their Families. A Partnership with the U.S.
Congress, U.S. Centers for Medicare and Medicaid Services, CHI and a Growing Number of
States.” Hospice Care for Children. Eds. Armstrong-Dailey, A. and S. Zarbock. New York:
Oxford University Press. 3rd edition.

Book
Knapp, C., V. Madden, and S. Fowler-Kerry Eds. Pediatric Palliative Care: Global Perspectives.
New York: Springer Press. ISBN 978-94-007-2569-0.

Invited Commentary
Knapp, C. and K. Komatz. “Preferences for End-of-Life Care for Children with Cancer.”
Canadian Medical Association Journal, August 2011.

Knapp, C. (2013) “Commentary on Alsirafy et al. The Use of Opioids at the End-of-Life and the
Survival of Egyptian Palliative Care Patients with Advanced Cancer.” Annals of Palliative
Medicine, 2(4):202. DOI 10.3978/j.issn2224-5820.2013.10.03.

Knapp, C. (2014) “To Check or Not to Check? The Role of Checklists in Children’s Palliative
Care.” Palliative Medicine. June 2014.

TEACHING & MENTORSHIP

Undergraduate Independent Study, HPA 496, Pennsylvania State University, 2014 (7.0/7.0)
Health Economics, HPA 445 Pennsylvania State University, 2014 (6.0/7.0)
Health Economics, HPA 445 Pennsylvania State University, 2014 (6.29/7.0)
Health Outcomes and Policy Seminar, GMS 6898 University of Florida, 2014 (4.61/5.00)
Health Outcomes and Policy Seminar, GMS 6898 University of Florida, 2013 (5.00/5.00)
Health Economics, ECP 3035 University of Florida, 2011 (3.81/5.00)
Introduction to Clinical/Translational Research, GMS 7093 Co-Group Leader University of
Florida, 2010 (97%/100%)
Meta-Analysis, GMS 6846 University of Florida, 2010 (4.4/5.00)
Data Management and Analysis in SPSS, University of Florida, 2009 (4.82/5.00)
Data Management and Analysis in SPSS, University of Florida, 2008 (4.89/5.00)
Health Economics, ECP 3035 University of Florida, 2008 (4.50/5.00)
Clinical and Translational Science Seminar, GMS 6893 University of Florida, 2007 (4.74/5.00)
Public Finance, ECO 4504 University of Florida, 2006 (4.31/5.00)
Public Finance, ECO 4504 University of Florida, 2005 (4.91/5.00)
Macroeconomics, National American University, 2003 (no rating given)
Managerial Economics, ECP 3103 University of Florida, 2002 (4.66/5.00)

TRAINING 7

TeamSTEPPS Training Courses Given (Master Trainer)
UF Department of Health Outcomes and Policy, September 2013.
Children’s Medical Services Network, Gainesville Area Office, September 2013.
Children’s Medical Services Network, Tallahassee Area Office, October 2013.
Children’s Medical Services Network, Jacksonville Area Office, November 2013.
Children’s Medical Services Network, Ocala Area Office, October 2013.
Children’s Medical Services Network, Ft. Myers Area Office, March 2014
Children’s Medical Services Network, Naples Area Office, March 2014
Children’s Medical Services Network, Sarasota Area Office, March 2014

Knapp, C.

Children’s Medical Services Network, St. Petersburg Area Office, April 2014
Children’s Medical Services Network, Ft. Pierce Area Office, April 2014
Children’s Medical Services Network, Ft. Lauderdale Area Office, May 2014
Children’s Medical Services Network, Miami Area Office, May 2014
Children’s Medical Services Network, Marathon Area Office, May 2014
Children’s Medical Services Network, West Palm Beach Area Office, May 2014
Children’s Medical Services Network, Tampa Area Office, May 2014
Children’s Medical Services Network, Lakeland Area Office, May 2014
Children’s Medical Services Network, Orlando Area Office, May 2014
Children’s Medical Services Network, Melbourne Area Office, May 2014
Children’s Medical Services Network, Tallahassee Headquarters Office, May 2014

UERMMMC College of Nursing, Quezon City, Philippines, October 2013.

Tata Memorial Hospital, Mumbai, India, February 2014.

End of Life Nursing Curriculum, Faculty, Denver 2013.

PROFESSIONAL EXPERIENCE

Pennsylvania State University, Department of Health Policy and Administration,

State College, Pennsylvania
Senior Instructor
Research Associate Professor
2014-Present

Department of Health Outcomes and Policy, University of Florida
Institute for Child Health Policy, University of Florida
Associate Professor (promoted from Assistant to Associate in 2012)
2006- 2014

EXTERNAL FUNDING

Ongoing

2014-2015: Principal Investigator. Identifying Urban Transition Priority Areas for Mother and
Child Interventions in Cape Town. Penn State University, Global Health Network. $6,000.

2014-2015: Supervising Faculty. Adherence to International Pediatric Pain Protocols.
Africana Research Center, Penn State University. $2,000.

Completed (selected)

2014: Principal Investigator (Site PI). Children’s Health Insurance Program Reauthorization Act
Evaluation of Year 5. University of Florida. $130,000.

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2014: Principal Investigator. Leadership Training for Children’s Medical Services Network.
$9,645.

2013-2014: Principal Investigator. Research and Program Evaluation of the Title V Program for
Children with Special Health Care Needs, Florida Department of Health, Children’s Medical
Services Network. $1,564,961.

2011-2014: Principal Investigator. Children’s Health Insurance Program Reauthorization Act
Testing and Refining Pediatric Performance Measures. U.S. Department of Health and Human
Services, Centers for Medicare and Medicaid. $1,763,290.

2011-2014: Principal Investigator. Children’s Health Insurance Program Reauthorization Act
Evaluation of the Florida Medical Home Demonstration Grant. U.S. Department of Health and
Human Services, Centers for Medicare and Medicaid. $537,900.

2011-2014: Principal Investigator. Evaluation of the Florida Pediatric Medical Home
Demonstration Project: Children’s Medical Services Practices. Florida Department of Health,
Children’s Medical Services Network. $435,729.

2012-2013: Principal Investigator. Florida Healthy Kids Medical Quality Audit. Florida Healthy
Kids Corporation. $1,050,840.

2013: Principal Investigator. Assessment of Provider Satisfaction, Florida Department of Health,
Children’s Medical Services Network. $10,500.

2009-2012: Co-Investigator. PROMIS Patient Reported Outcomes Measurement Information
Systems. Subcontract from U. North Carolina Chapel Hill (NIH U01 AR052181). $75,000.

2010-2011: Co-Principal Investigator. Developing an Educational Intervention About
Reproductive Concerns Adolescent Females with Cancer, Subcontract from Northwestern
University, (NIH 1 UL1 DE019587 and RL1HD058296) $20,000.

2009-2010: Co-Investigator. Developing a Reproductive Concerns Scale for Adolescent Females
with Cancer, Subcontract from Northwestern University, (NIH 1 UL1 DE019587 and
RL1HD058296) $20,000.

2008-2009: Co-Investigator. Pilot Project. Validating a Quality of Life Tool for Childhood
Cancer Survivors, H Lee Moffitt Cancer Center & University of Florida, $75,000.

POSTERS & PRESENTATIONS

State (selected from 2010-present)

“CHIPRA Measures in the Pediatric Medical Home” American Academy of Pediatrics,
Learning Session April 2014, Presentation.

“Testing and Refining Pediatric Quality of Care Measures” UF College of Medicine
Research Day 2014, Poster.

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“Development of an Instrument to Prompt Health Care Workers to Discuss Fertility
Preservation with Adult reproductive Age Cancer Patients” UF Residency Research Day
2013, Poster.

“Determining the UF Target Population for Fertility Preservation Counseling and Care”
UF College of Medicine Research Day 2013, Poster.

“Trends in Child Health Quality Outcomes” Florida Healthy Kids Corporation Annual
Quality Forum 2012, Presentation.

"Establishment of a Model for an On-Site Fertility Preservation Clinic for Cancer
Patients" UF College of Medicine Research Day 2012, Poster.

"Factors Associated with a Medical Home Among Children with ADHD" UF College of

Medicine Research Day 2012, Poster.

"Racial and Ethnic Variation in ADHD, Co-Occurring Illnesses and Parental Strain" UF

College of Medicine Research Day 2011, Poster.

"Pediatricians’ Perceptions of ADHD in Primary Care" Children’s Mental Health Research

and Policy 2010, Poster.

"Psychosocial and Systematic Factors in Fertility Preservation for Cancer Patients"

University of Florida College of Medicine, Department of OB/GYN 2010, Grand Rounds
Seminar.

“Striving to be Normal: A Secondary Analysis of Shared Decision-Making as Adolescents with
HIV Transition to Adulthood” Nursing Research and Evidence- Based Nursing Conference,
SUNY, 2010, Poster.

“The Butterfly Bundle” 1st Annual Palliative Care Conference, UF, 2010, Poster.

“Development of an Adolescent Reproductive Concerns Scale” UF College of Medicine Annual
Research Day, 2010, Poster.

“Educational Outcomes of Adopted Children” UF College of Medicine Annual Research Day,
2010, Poster.

“Fertility Preservation for Cancer Patients” Central Florida Community College and Ocala
Royal Dames Association, 2010, Presentation.

National (selected from 2010-present)
“Inhibiting Factors to the Pediatric Medical Home” AcademyHealth, San Diego, CA 2014,
Poster.

“Adverse Childhood Experiences and Health Outcomes in Childhood/Adolescence” American
Psychosomatic Society, San Francisco, CA 2014, Poster.

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“Comparing Two Medical Home Patient Experiences Instruments” AcademyHealth, Baltimore,
MD 2013, Panel Presentation.

“Factors Associated with a Medical Home Among Children with Behavioral Health Conditions”
Pediatric Academic Societies, Philadelphia, PA 2013, Poster.

“Building a Stable Medical Home: Staff Burnout and Medical Home Infrastructure in 20
Pediatric Primary Care Practices” Pediatric Academic Societies, Philadelphia, PA 2013, Poster.

“Impact of a Priming Prompt on Discussions of Fertility Among Female Teen Oncology
Families” Northwestern BioEthics Smart Symposium, Chicago, IL 2012, Poster.

“Coping Styles of Adolescent Cancer Patients Faced with Potential or Actual Fertility Loss”
Northwestern BioEthics Smart Symposium, Chicago, IL 2012, Poster.

“Communicating with Young Cancer Patients about Reproductive Health” International
Conference on Communication in Healthcare, 2012 Presentation.

“Evaluating States’ CHIPRA Medical Home Demonstrations: Baseline Findings and Strategies
for Addressing Methodological Challenges: Florida’s Pediatric Medical Home Demonstration
Project: Staff Experiences” AcademyHealth Annual Child Meeting, 2012 Presentation.

“Development of a Tool to Discuss Fertility Preservation with Adolescent Females”

International Symposium of Supportive Care in Cancer, 2012 Presentation.

“Communicating with Young Female Cancer Patients about Reproductive Health: Development

of a Values Clarification Tool” European Association for Cancer Health, 2012.

“A Values Clarification Tool for Teen Girls and Parents: Pilot Results” American Psychological
Association, 2012 Poster.

“Developing and Fostering a research Agenda in Pediatric Palliative Care” Grand Rounds,
PACT Team Dana Farber Cancer Center, Harvard University 2012 Presentation.

“Determinants of Referrals for Pediatric Palliative Care and Related Pain Management
Patterns” Eastern Nursing Research Society, 2012 Poster.

“The Butterfly Bundle” American Association of Critical Care Nursing & National Teaching
Institute Conference, 2011, Poster.

“Women Veterans and Their Informal Caregivers’ Experiences Accessing VA-Health Care
Services.” AcademyHealth, 2011, Poster.

"Community Nurse Care Coordination: Reducing Health Disparities for Children with Special
Health Care Needs." Pediatric Academic Societies, 2011, Presentation.

"Relationship between Parental Strain and Family Resources among Parents of Children with
ADHD and Co-Occurring Mental and Physical Disorders" Pediatric Academic Societies, 2011,
Poster.

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“Development of an Adolescent Reproductive Concerns Scale” Pediatric Academic Societies,
2011, Poster.

“Long Term Cost Analysis of Photoselective Vaporization of the Prostate and Transurethral
Resection of the Prostate in the Management of Benign Prostatic Hypertrophy in the Veterans
Administration Health System” American Urological Association 2011, Presentation.

“Differences Between Parents and Adolescents with Cancer” American Psychological
Association 2010, Presentation.

“Professional Education, Geographic and Practice Determinants of Referrals for Pediatric
Palliative Care and Pain Management Patterns” Eastern Regional Nursing Society 2010, Poster.

“Caring for Children with Life Threatening Illnesses: Impact on White, African American, and
Latino Families”. Mid-South Sociological Association 2010, Presentation.

“Cancer Surviving Girls and Their Healthy Peers: Understanding Infertility”. American
Psychological Association 2010, Presentation.

“Florida’s Partner’s in Care: Together for Kids Pediatric Palliative Care Program”. Children’s
Hospice International and U.S. Department of Health and Human Services 2010, Presentation.

“The Butterfly Bundle” American Association of Critical Care Nursing Conference, 2010, Poster.

“Striving to be Normal: A Secondary Analysis of Shared Decision-Making as
Adolescents with HIV Transition to Adulthood” Eastern Nursing Research Society, 2010,
Poster.

International (selected from 2010-present)

“Collaborative and Evidence Based Practice Toward Quality Care,” College of Nursing,
Resource Lecturer, 2014. U. of the Philippines, Manila, Philippines.

“Using Learning Collaboratives in Applied Settings: An Application for the Philippines,”
1st International and 5th Tri-Level National Conference. “ASEAN 2015: Opportunities
for Collaboration in Education”. 2014. U. of the Philippines, Manila, Philippines.

“Implementation Science as a Gateway to Research,” 1st International and 5th Tri-Level
National Conference. “ASEAN 2015: Opportunities for Collaboration in Education”.
2014. U. of the Philippines, Manila, Philippines.

“Using Practice Based Interventions to Drive Value Based Health in Pediatrics,” Dean
Emeritus Evangelina M. Dumlao Lecture Series November 11, 2014, Invited Lecturer.
UERMMC Manila, Philippines.

“Good To Great: Building Leadership Skills in Palliative Care” International Children’s
Palliative Care Network Conference 2014, Workshop. India.

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“Quality Improvement in Palliative Care” International Children’s Palliative Care
Network Conference 2014, Nursing Workshop. India.

“Quality Improvement in Nursing”, 2013, Nursing Workshop. Philippines.

“Teamwork and Leadership in Nursing”, 2013, Nursing Workshop. Philippines.

“A Delphi Study to Identify Global Priorities for Research into Children’s Palliative
Care: Preliminary Results” European Association of Palliative Care 2013, Presentation.
Czech. Republic.

“Child Health Status and Functioning in an Integrated Pediatric Palliative Care
Program” Kenyan Hospice and Palliative Care Association 2012, Presentation. Kenya.

“Pediatric Palliative Care Provision Around the World: A Systematic Review” Kenyan
Hospice and Palliative Care Association 2012, Presentation. Kenya.

“Pediatric Palliative Care Provision Around the World: A Systematic Review” Eastern
European Hospice Association 2011, Presentation. Belarus.

"Establishment of a Model for an On-Site Fertility Preservation Clinic for Cancer
Patients" World Congress on Fertility Preservation 2011, Poster. Miami, Florida.

MEMBERSHIP
Group on Women in Medicine and Science, American Association of Medical Colleges
Florida Hospices and Palliative Care, Pediatric Initiative Steering Committee Member
Florida Hospices and Palliative Care, Care Models and Education Committee Member
International Association of Hospice and Palliative Care
International Children’s Palliative Care Network
National Association of Professional Women
AcademyHealth
American Public Health Association
International Health Economics Association
International Society of Pharmacoeconomics and Outcomes Research
International Society for Pediatric Oncology

SERVICE
2013 Journal of Medical Internet Research (1), Journal of Palliative Care (1), Journal of
Palliative Medicine (2), SAGE Open (1), Pediatrics (4), Health Services Insights (1), Journal of
the Health Care for the Poor and Underserved (1), BMC Palliative Medicine (1), Supportive
Care in Cancer (3), Pediatric Nursing (2), Maternal and Child Health (1), Journal of Pediatrics
(1), American Journal of Hospice and Palliative Medicine (8), Journal of Pain and Symptom
Management (2), Journal Reviewer.

2014 American Journal of Hospice and Palliative Medicine (3), Time Journal of Medical Report
and Research (1), BMC Research Notes (1), Palliative Medicine (1), Journal of Pediatric Surgery
(1), Journal of Adolescent and Young Adult Oncology (1), Maternal and Child Health Journal
(1), BMC Health Services Research (1), Supportive Care in Cancer (2), Journal Reviewer.

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2015 JAMA Pediatrics (1), American Journal of Hospice and Palliative Medicine (1), BMJ Open
(1), Journal Reviewer.

2013 International Journal of Palliative Care (5), Editorial Reviewer.

2011 Oxford University Press, Book Reviewer.

2010 AHRQ Grant Reviewer, ARRA-AHRQ Recovery Act Limited Competition: PROSPECT
Studies, Building New Clinical Infrastructure for Comparative Effectiveness Research Section
June 2010.

2010 AHRQ Grant Reviewer, Career Development Health Care Research Study Section June
2010.

2010 OPHS Grant Reviewer, Teenage Pregnancy Prevention Study Section July 2010.

2010 OPHS Chairperson, Teenage Pregnancy Prevention Study Section July 2010.

2012 US DHH & CMS- CIIO (Center for Consumer Information and Insurance Oversight), Grant
Reviewer, Cooperative Agreements to Support Establishments of State-Operated Health
Insurance Exchanges November 2012.

2013 US DHH & CMS- CIIO (Center for Consumer Information and Insurance Oversight), Grant
Reviewer, Cooperative Agreements to Support Establishments of State-Operated Health
Insurance Exchanges January 2013.

2013 Patient Centered Outcomes Research Institute, Scientific Grant Reviewer, Improving
Health Care Systems April 2013.

2013 US DHH & CMS- CIIO (Center for Consumer Information and Insurance Oversight), Grant
Reviewer, Cooperative Agreements to Support Establishments of State-Operated Health
Insurance Exchanges March 2013.

2013 US DHH & CMS- CIIO (Center for Consumer Information and Insurance Oversight), Grant
Reviewer, Cooperative Agreements to Support Establishments of State-Operated Health
Insurance Exchanges August 2013.

2013 Patient Centered Outcomes Research Institute, Scientific Grant Reviewer, Improving
Health Care Systems November 2013.

2013 US DHH & CMS- CIIO (Center for Consumer Information and Insurance Oversight), Grant
Reviewer, Cooperative Agreements to Support Establishments of State-Operated Health
Insurance Exchanges November 2013.

2014, HRSA, Public Health Traineeships, Grant Reviewer, July 2014.

2014 Patient Centered Outcomes Research Institute, Scientific Grant Reviewer, Improving
Health Care Systems February 2015.

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Editorial Board Member, American Journal of Hospice and Palliative Medicine, 2010.

Editorial Board Member, Palliative Medicine, 2012.

Associate Editor, Annuals of Palliative Medicine, 2012.

Editorial Board Member, International Journal for Palliative Care, 2013.

Editorial Board Member, Nordisk Tidsskrift I Barnepalliasjon, 2014.

MEDIA
What is Current in Children’s Hospice? Concurrent Care. Paidos, Tidsskrift for Norsk
Barnelegeforening Article October 9, 2014. Norwegian Children’s Palliative Care Journal.

The Need for Research in Children’s Palliative Care Hospice, Article February 8, 2013.
http://www.ehospice.com/internationalchildrens/en-gb/home.aspx

Help for Sick Youth Offered, Lakeland Ledger and Sarasota Herald, Article

March 25, 2012. http://www.heraldtribune.com/article/20120325/ARCHIVES/203251035

Pediatric Palliative Care in Europe Expands, Journal of the National Cancer Institute, Article

Vol 104, Issue 1. January 4, 2012.

http://jnci.oxfordjournals.org/content/104/1/10.full.pdf+html

Contrasting Views on Treatment of Children Dying From Cancer, MedScape News, Article
October 19, 2011. http://www.medscape.com/viewarticle/751756?src=emailthis

Internet Use and eHealth Literacy of Low-Income Parents Whose Children Have Special Health
Care Needs, MDLinx, Article October 2011.

Fertility preservation for young cancer patients The Post, University of Florida, Article October
2010.

Babies? Preserving fertility a complicated issue for young cancer patients UF Cancer News
Release, August 2010.

Adolescents with Life-Threatening Illnesses, MDLinx, Article January 2010.

Pediatricians’ Management of Chronic Pain, Pain and Management News and Research, Article
March 2010.

LICENSURE
Certified Professional in Health Care Quality (CPHQ), October 2013

SHORT COURSES COMPLETED
ICPCN Nursing in Pediatric Palliative Care, 2014
NCQA Advanced Topics in Patient-Centered Medical Home Recognition, 2013
NCQA Facilitating Patient-Centered Medical Home Recognition, 2013
Institute for HealthCare Improvement (Certificates), Fundamentals of Improvement, The Model
for Improvement, Measuring for Improvement, Putting it All Together, The Human Side of
Improvement, Introduction to Patient Safety.

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Institute for HealthCare Improvement, Summer Immersion Fellow, 2013
TeamSTEPPS Master Trainer Course (Certificate), 2013
Managing at UF: The Supervisory Challenge (Certificate), 2012. Courses Include:

Fair and Legal Supervision, Communication for Managers, Power of Feedback,
Emotional Intelligence, Thinking Strategically, Inspiring Trust, Delegation, Leading a
Team, Leading, and Change in Teams.
Medical Home Training Program (Certificate), National Medical Home Summit 2012
SAS Course: Programming Essentials 1, 2011
Research Talk Inc. Qualitative Methods Course, 2010
End-of-Life Nursing Consortium Certified Trainer, 2009
Research Methods in Palliative Care, 2009
Cost Effectiveness Alongside Clinical Trials, 2009
Propensity Score Matching, 2009
Advanced Methods in Patient Reported Outcomes, 2009
Statistical Considerations in Health Economics, 2009

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