Health Care Transition for Adolescents With CKD-The Journey From Pediatric to Adult Care

Advances in Chronic Kidney Disease

Volumn 18, Issue 5, 2011, Pages 384-390

  Bell, Lorraine E ^a,b,c   Ferris, Maria E ^a,b,c   Fenton, Nicole ^a,b,c   Hooper, Stephen R ^a,b,c  

^a MCGILL UNIVERSITY   (Canada)

^b UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^c University of North Carolina at Chapel Hill   (United States)

Author keywords

Adolescent; Chronic disease; Health services; Health transition; Kidney disease

Indexed keywords

ADOLESCENCE; ADULTHOOD; CHILD CARE; CHRONIC KIDNEY DISEASE; COGNITION; COMORBIDITY; DEVELOPMENTAL STAGE; DOCTOR PATIENT RELATION; EDUCATIONAL STATUS; HEALTH CARE; HEALTH LITERACY; HEALTH SERVICE; HEATH CARE TRANSITION; HUMAN; KIDNEY FAILURE; LONGEVITY; PATIENT CARE; PATIENT COMPLIANCE; PATIENT EDUCATION; PEDIATRICS; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; VALIDATION PROCESS;

ADOLESCENT; FEMALE; HUMANS; KIDNEY FAILURE, CHRONIC; LONGEVITY; MALE; PATIENT COMPLIANCE; QUALITY OF LIFE; TRANSITION TO ADULT CARE; YOUNG ADULT;

EID: 80052405147     PISSN: 15485595     EISSN: 15485609     Source Type: Journal    
DOI: 10.1053/j.ackd.2011.04.003     Document Type: Review

References (62)

1. Reiss J., Gibson R. Health care transition: destinations unknown. Pediatrics 2002, 110(6 pt 2):1307-1314.
2. Ferris M.E., Gipson D.S., Kimmel P.L., Eggers P.W. Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol 2006, 21:1020-1026.
3. Bell L.E., Sawyer S.M. Transition of care to adult services for pediatric solid-organ transplant recipients. Pediatr Clin North Am 2010, 57:593-610.
4. 2009 World Population Data Sheet. Population Reference Bureau 2010. Available at: Accessed December 18, 2010. http://www.prb.org/Publications/Datasheets/2009/2009wpds.aspx.
5. Australia and New Zealand Dialysis and Transplant Registry Report 2009. Australia and New Zealand Dialysis and Transplant Registry 2010. Available at: Accessed December 17, 2010. http://www.anzdata.org.au/v1/report_2009.html.
6. US Census Bureau; 2010. Available at: Accessed December 19, 2010. http://www.census.gov/.
7. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002, 110:1304-1306. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine.
8. Rosen D.S., Blum R.W., Britto M., Sawyer S.M., Siegel D.M. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 2003, 33:309-311. Society for Adolescent Medicine.
9. Bell L.E., Bartosh S.M., Davis C.L., et al. Adolescent transition to adult care in solid organ transplantation: a consensus conference report. Am J Transplant 2008, 8:2230-2242.
10. Kieckhefer G.M., Trahms C.M. Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs 2000, 26:354-363.
11. Hersh A., Pang S., Curran M., Milojevic D., von Scheven E. The challenges of transferring chronic illness patients to adult care: reflections from pediatric and adult rheumatology at a US academic center. Pediatr Rheumatol 2009, 7:13.
12. Knauth A., Verstappen A., Reiss J., Webb G.D. Transition and transfer from pediatric to adult care of the young adult with complex congenital heart disease. Cardiol Clin 2006, 24:619-629.
13. Rosen D.S. Transition of young people with respiratory diseases to adult health care. Paediatr Respir Rev 2004, 5:124-131.
14. Weissberg-Benchell J., Wolpert H., Anderson B.J. Transitioning from pediatric to adult care. Diabetes Care 2007, 30:2441-2446.
15. Arnett J.J. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 2000, 55:469-480.
16. Patton G.C., Coffey C., Sawyer S.M., et al. Global patterns of mortality in young people: a systematic analysis of population health data. Lancet 2009, 374:881-892.
17. Park M.J., Paul Mulye T., Adams S.H., Brindis C.D., Irwin J. The health status of young adults in the United States. J Adolesc Health 2006, 39:305-317.
18. Watson A.R. Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol 2005, 20:113-117.
19. Suris J.C., Michaud P.A., Akre C., Sawyer S.M. Health risk behaviors in adolescents with chronic conditions. Pediatrics 2008, 122:e1113-e1118.
20. Annunziato R.A., Emre S., Schneider B., Barton C., Dugan C.A., Shemesh E. Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatr Transplant 2007, 11:608-614.
21. Bell L. Adolescents with renal disease in an adult world: meeting the challenge of transition of care. Nephrol Dial Transplant 2007, 22:988-991.
22. USRDS 2010 Annual Data Report: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States 2010, U.S. Renal Data System, U.S. Renal Data System, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, Available at:, Accessed December 18, 2010. http://www.usrds.org/adr.htm.
23. Tew B.J., Payne H., Laurence K.M. Must a family with a handicapped child be a handicapped family?. Dev Med Child Neurol 1974, 16:95-98.
24. Lansky S.B., Cairns N.U., Hassanein R., Wehr J., Lowman J.T. Childhood cancer: parental discord and divorce. Pediatrics 1978, 62:184-188.
25. Blum R.W., Garell D., Hodgman C.H., et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993, 14:570-576.
26. NAPRTCS 2008 Annual Report. North American Pediatric Renal Trials and Collaborative Studies. Available at: Accessed December 18, 2010. https://web.emmes.com/study/ped/annlrept/Annual%2520Report%2520%132008.pdf.
27. Mahan J.D., Warady B.A. Assessment and treatment of short stature in pediatric patients with chronic kidney disease: a consensus statement. Pediatr Nephrol 2006, 21:917-930.
28. Gipson D.S., Wetherington C.E., Duquette P.J., Hooper S.R. The nervous system and chronic kidney disease in children. Pediatr Nephrol 2004, 19:832-839.
29. Duquette P., Hooper S.R., Wetherington C.E., Icard P.F., Gipson D.S. Intellectual and academic functioning in pediatric chronic kidney disease. J Pediatr Psychol 2007, 32:1011-1017.
30. Qvist E., Pihko H., Fagerudd P., et al. Neurodevelopmental outcome in high-risk patients after renal transplantation in early childhood. Pediatr Transplant 2002, 6:53-62.
31. Groothoff J.W., Grootenhuis M.A., Offringa M., Stronks K., Hutten G.J., Heymans H.S. Social consequences in adult life of end-stage renal disease in childhood. J Pediatr 2005, 146:512-517.
32. Goldstein S.L., Graham N., Burwinkle T., et al. Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol 2006, 21:846-850.
33. Kerns K.A., Tomich P.L., Aspelmeier J.E., Contreres J.M. Attachment based assessments of parent-child relationships in middle childhood. Dev Psychol 2000, 36:614-626.
34. Duncan S.C. The role of cognitive appraisal and friendship provisions in adolescents' affect and motivation toward activity in physical education. Res Q Exerc Sport 1993, 64:314-323.
35. Goldstein S., Rosburg N., Warady B., et al. Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis. Pediatr Nephrol 2009, 24:1553-1560.
36. Sabaté E. Adherence to Long-Term Therapies: Evidence for Action 2003, World Health Organization, Geneva, Switzerland, Available at:, Accessed December 23, 2010. http://apps.who.int/medicinedocs/pdf/s4883e/s4883e.pdf.
37. Rapoff M.A. Adherence to Pediatric Medical Regimens 2010, Springer, New York, NY. 2nd ed.
38. La Greca A.M., Mackey E.R. Adherence to pediatric treatment regimens. Handbook of Pediatric Psychology 2009, 130-152. The Guilford Press, New York, NY. 4th ed. M.C. Roberts, R.C. Steele (Eds.).
39. Zelikovsky N., Schast A.P., Palmer J., Meyers K.E. Perceived barriers to adherence among adolescent renal transplant candidates. Pediatr Transplant 2008, 12:300-308.
40. Simons L.E., McCormick M.L., Mee L.L., Blount R.L. Parent and patient perspectives on barriers to medication adherence in adolescent transplant recipients. Pediatr Transplant 2009, 13:338-347.
41. Groothoff J.W., Grootenhuis M., Dommerholt A., Gruppen M.P., Offringa M., Heymans H.S. Impaired cognition and schooling in adults with end stage renal disease since childhood. Arch Dis Child 2002, 87:380-385.
42. Soliday E., Kool E., Lande M. Family environment, child behavior, and medical indicators in children with kidney disease. Child Psychiatry Hum Dev 2001, 31:279-295.
43. Soliday E., Kool E., Lande M.B. Psychosocial adjustment in children with kidney disease. J Pediatr Psychol 2000, 25:93-103.
44. Brindis CD, Mulye TP, Park MJ, Irwin CE Jr. Young people's health care: a national imperative NIHCM Foundation; 2006. Available at: Accessed December 20, 2010. http://nihcm.org/pdf/YoungPeoplesHCFINAL.pdf.
45. Callahan S.T., Cooper W.O. Changes in ambulatory health care use during the transition to young adulthood. J Adolesc Health 2010, 46:407-413.
46. Irwin J. Young adults are worse off than adolescents. J Adolesc Health 2010, 46:405-406.
47. Betz C.L. Transition of adolescents with special health care needs: review and analysis of the literature. Issues Compr Pediatr Nurs 2004, 27:179-241.
48. Ferris M.E., Mahan J.D. Pediatric chronic kidney disease and the process of health care transition. Semin Nephrol 2009, 29:435-444.
49. Betz C., Redcay G., Tan S. Self-reported health care, self-care needs of transition-age youth: a pilot study. Issues Compr Pediatr Nurs 2003, 26:159-181.
50. Betz C.L. California healthy and ready to work transition health care guide: developmental guidelines for teaching health care. Issues Compr Pediatr Nurs 2000, 23:203-244.
51. Buran C.F., Sawin K.J., Brei T.J., Fastenau P.S. Adolescents with myelomeningocele: activities, beliefs, expectations, and perceptions. Dev Med Child Neurol 2004, 46:244-252.
52. Cappelli M., MacDonald N.E., McGrath P.J. Assessment of readiness to transfer to adult care for adolescents with cystic fibrosis. Child Health Care 1989, 18:218-224.
53. Kennedy S., Martis S., Kelley J., et al. Identification of medical and nonmedical needs of adolescents and young adults with spina bifida and their families: a preliminary study. Child Health Care 1998, 27:47-61.
54. Berney-Martinet S., Key F., Bell L., et al. Psychological profile of adolescents with a kidney transplant. Pediatr Transplant 2009, 13:701-710.
55. Beresford B.A., Sloper P. Chronically ill adolescents' experiences of communicating with doctors: a qualitative study. J Adolesc Health 2003, 33:172-179.
56. Freed L.H., Ellen J.M., Irwin C.E., Millstein S.G. Determinants of adolescents' satisfaction with health care providers and intentions to keep follow-up appointments. J Adolesc Health 1998, 22:475-479.
57. Litt I.F., Cuskey W.R. Satisfaction with health care: a predictor of adolescents' appointment keeping. J Adolesc Health Care 1984, 5:196-200.
58. Britto M.T., Slap G.B., DeVellis R.F., et al. Specialists understanding of the health care preferences of chronically ill adolescents. J Adolesc Health 2007, 40:334-341.
59. Brown J.D., Wissow L.S. Discussion of sensitive health topics with youth during primary care visits: relationship to youth perceptions of care. J Adolesc Health 2009, 44:48-54.
60. McDonagh J.E., Kaufman M. The challenging adolescent. Rheumatology 2009, 48:872-875.
61. Ferris M, Bickford K, McCoy LW. UNC Transition Program: Smooth Transition to Adulthood with Renal Disease (STARx). Available at: Accessed December 23, 2010. http://unckidneycenter.org/hcprofessionals/transition.html.
62. Health Care Transition Research Consortium. Available at: Accessed December 23, 2010. http://healthcaretransitionresearch.org/index.htm.