Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition

Nursing Outlook

Volumn 61, Issue 5, 2013, Pages 311-336

  Betz, Cecily L ^a   Lobo, Marie L ^b   Nehring, Wendy M ^c   Bui, Kim ^d  

^a UNIVERSITY OF SOUTHERN CALIFORNIA   (United States)

^b UNIVERSITY OF NEW MEXICO   (United States)

^c EAST TENNESSEE STATE UNIVERSITY   (United States)

^d LOS ANGELES COUNTY DEPARTMENT OF PUBLIC HEALTH   (United States)

Author keywords

Adolescents; Emerging adults; Review of literature; Special health care needs; Systematic review; Youth

Indexed keywords

ADOLESCENT; ADOLESCENTS; ARTICLE; ATTITUDE TO HEALTH; EMERGING ADULTS; HUMAN; JUVENILE; REVIEW OF LITERATURE; SPECIAL HEALTH CARE NEEDS; SYSTEMATIC REVIEW; TRANSITION TO ADULT CARE; YOUNG ADULT;

ADOLESCENTS; EMERGING ADULTS; REVIEW OF LITERATURE; SPECIAL HEALTH CARE NEEDS; SYSTEMATIC REVIEW; YOUTH;

ADOLESCENT; ATTITUDE TO HEALTH; HUMANS; TRANSITION TO ADULT CARE; YOUNG ADULT;

EID: 84883767947     PISSN: 00296554     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.outlook.2013.01.008     Document Type: Article

References (98)

1. Al-Yateem N. Child to adult: transitional care for young adults with cystic fibrosis. British Journal of Nursing 2012, 21:850-854.
2. American Academy of Pediatrics, American Academy of Family Physicians, & American College Physicians, Transitions Clinical Report Authoring Group Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011, 128:182-200. 10.1542/peds.2011-0969.
3. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine Aconsensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002, 110:1304-1306.
4. Anie K.A., Telfair J. Multi-site study of transition in adolescents with sickle cell disease in the United Kingdom and the United States. Int J Adolesc Med Health 2005, 17(2):169-178.
5. Anthony S.J., Kaufman M., Drabble A., Seifer-Hansen M., Dipchand A.I., Martin K. Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant 2009, 9:614-619.
6. Arnett J.J. Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol 2000, 55(5):469-480. 10.1037//0003-066X.55.5.469.
7. Arnett J.J. Adolescence and Emerging Adulthood: A Cultural Approach 2007, Pearson-Prentice Hall, Upper Saddle River, NJ. 3rd ed.
8. st Century 2006, American Psychological Association, Washington, DC. J.J. Arnett, J.L. Tanner (Eds.).
9. Belair C., Gilleland J., Amral S. Assessing the satisfaction of teens with kidney transplants who have attended adolescent transition clinic. Int J Adolesc Health 2011, 4:257-263.
10. 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.
11. Betz, C. L. (in press). Health care transition for adolescents with special health care needs: Where's nursing? Nursing Outlook.
12. Betz C.L., Smith K., Macias K. Testing the transition preparation training program: A randomized controlled trial. Int J Child Adolesc Health 2011, 3:595-607.
13. Bloom M.S., Kuhlthau K., Van Cleave J., Knapp A.A., Newacheck P., Perrin J.M. Health care transition for youth with special health care needs. JAdolesc Health 2012, 51:213-219. 10.1016/j.jadohealth.2012.01007.
14. Blum R.W., Garell D., Hodgman C.H., Jorissen T.W., Okinow N.A., Orr D.P., Slap G.B. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. JAdolesc Health 1993, 14:570-576.
15. Brodie L., Crisp J., McCormack B., Wilson V., Bergin P., Fulham C. Journeying from nirvana with mega-mums and broken hearts: The complex dynamics of transition from paediatric to adult settings. Int J Child Adolesc Health 2011, 3(4):517-526.
16. Bryant R., Walsh T. Transition of the chronically ill youth with hemoglobinopathy to adult health care: Asystematic review of the literature. JPediatr Health Care 2009, 23:37-48.
17. Bundock H., Fidler S., Clarke S., Holmes-Walker D.J., Farrell K., McDonald S., Foster C. Crossing the divide: Transition care services for young people with HIV-their views. AIDS Patient Care STDs 2011, 25:465-473.
18. Busse F.P., Hiermann P., Galler A., Sturnvoll M., Wiessner T., Kiess W., Kappellen T.M. Evaluation of patients' opinion and metabolic control after transfer of young adults with type 1 diabetes from a pediatric diabetes clinic to adult care. Horm Res 2007, 67:132-138.
19. Bywater E. Adolescents with cystic fibrosis: Psychosocial adjustment. Arch Dis Child 1981, 56:538-543.
20. Cadario F., Prodam F., Bellone S., Trada M., Binotti M., Trada M., Aimaretti G. Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: A hospital-based approach. Clin Endocrinol 2009, 71:346-350.
21. Cappelli M., MacDonald N., McGrath P. Assessment for readiness to transfer to adult care for adolescents with cystic fibrosis. Child Health Care 1989, 18:218-224.
22. Centers for Disease Control and Prevention (2011). Improving the lives of people with one of the nation's most common neurological conditions: At a glance. Retrieved from. http://www.cdc.gov/chronicdisease/resources/publications/AAG/epilepsy.htm.
23. Chaturvedi S., Jones C.L., Walker R.G., Sawyer S.M. The transition of kidney transplant recipients: A work in progress. Pediatr Nephrol 2009, 24:1055-1060.
24. Christie D., Viner R. Chronic illness and transition: Time for action. Adolesc Med State Art Rev 2009, 20:981-987.
25. Clarizia N.A., Chahal N., Manlhiot C., Kilburn J., Redington A.N., McCrindle B.W. Transition to adult health care for adolescents and young adults with congenital heart disease: Perspectives of the patient, parent and health care provider. Can J Cardiol 2009, 25:e317-e322.
26. Court J. Outpatient-based transition services for youth. Pediatrician 1991, 18:150-156.
27. Court J. Issues of transition to adult care. JPaediatr Child Health 1993, 29:S53-S55.
28. Craig S.L., Towns S., Bibby H. Moving on from paediatric to adult health care: An initial evaluation of a transition program for young people with cystic fibrosis. Int J Adolesc Med Health 2007, 19:333-343.
29. Crowley R., Wolfe I., Lock K., McKee M. Improving the transition between paediatric and adult healthcare: A systematic review. Arch Dis Child 2011, 96:548-553.
30. Dabadie A., Troadec F., Heresbach D., Siproudhis L., Pagenault M., Bretagne J.F. Transition of patients with inflammatory bowel disease from pediatric to adult care. Gastroenterol Clin Biol 2008, 32(1):451-459.
31. Dieluweit U., Debatin K.M., Grabow D., Kaatsch P., Peter R., Seitz D.C., Goldbeck L. Social outcomes of long-term survivors of adolescent cancer. Psychooncology 2010, 19:1277-1284.
32. Ercan O., Alikasifoglu M., Erginoz E., Janda J., Kabicek P., Rubino A., Constantopoulos A., Ilter O., Vural M. Demography of adolescent health care delivery and training in Europe. Eur J Pediatr 2009, 168:417-426.
33. 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.
34. Geerts E., van de Wiel H., Tamminga R. Apilot study on the effects of the transition of pediatric to adult health care in patients with haemophilia and in their parents, patient andparent worries, parental illness-related distress and health-related quality of life. Haemophilia 2008, 14:1007-1013.
35. Giarelli E., Bernhardt B.A., Mack R., Pyeritz R.E. Adolescents' transition to self-management of a chronic genetic disorder. Qualitative Health Research 2008, 18(4):441-457.
36. Harrison T.M. Family-centered pediatric care: State of the science. J Pediatr Nurs 2010, 25:335-343.
37. Hess J.S., Straub D.M. Brief report: Preliminary findings from a pilot health care transition education intervention for adolescents and young adults with special health care needs. JPediatr Psychol 2010, 36:172-178.
38. Institute of Medicine. (2001). Crossing the quality chasm, A new health system for the 21st century. Retrieved from. http://www.nap.edu/openbook.php%3frecord_id%3d10027%26page%3d7.
39. Jalkut M.K., Allen P.J. Transition from pediatric to adult health care for adolescents with congenital heart disease: A review of the literature and clinical implications. Pediatr Nurs 2009, 35:381-387.
40. Jedeloo S., van Staa A., Latour J.M., van Exel N.J. Preferences for health care and self-management amongDutch adolescents with chronic conditions: A Q-methodological investigation. Int J Nurs Stud 2010, 47:593-603.
41. Jivanjee P., Kruzich J. Supports for young people with mental health conditions and their families in the transition years: Youth and family voices. Best Pract Ment Health 2011, 7:115-133.
42. Kingsnorth S., Gall C., Beayni S., Rigby P. Parents as transition experts? Qualitative findings from a pilot parent-led peer support group. Child Care. Health Dev 2011, 37:833-840.
43. Kirk S. Transition in the lives of young people in complex health care needs. Child Care Health Dev 2008, 34:567-575.
44. Koop, C. E. (1989). Surgeon General's introductory remarks. Paper presented at the 1989 Surgeon General's Conference: Growing Up and Getting Medical Care: Youth With Special Health Care Needs: A summary of conference proceedings. Retrieved from. http://profiles.nlm.nih.gov/NN/B/C/Z/S/_/nnbczs.pdf.
45. Latzman R.D., Majumdar S., Bigelow C., Elkin T.D., Smith M.G., Megason G.C., Iyer R. Transitioning to adult care among adolescents with sickle cell disease: A transitioning clinic based on patient and caregiver concerns and needs. Int J Child Adolesc Health 2011, 3:537-545.
46. LoCasale-Crouch J., Johnson B. Transition from pediatric to adult medical care. Adv Chronic Kidney Dis 2005, 12:412-417.
47. Lorenzi M.F., Xie L., Rogers P.C., Pritchard S., Goddard K., McBride M.L. Hospital-related morbidity among childhood cancer survivors in British Columbia, Canada: Report of the childhood, adolescent, young adult cancer survivors (CAYACS) program. Int J Cancer 2011, 128:1624-1631.
48. Luo W., Lane R., Stobart K., Morrison H., Schanzer D., Barr R., Greenberg M. The medical care cost of childhood and adolescent cancer in Manitoba, 1990-1995. Chronic Dis Can 2002, 23:83-90.
49. McMillen J.C., Raghavan R. Pediatric to adult mental health service use of young people leaving the foster care system. JAdolesc Health 2009, 44:7-13.
50. McPherson M., Arango P., Fox H., Lauver C., McManus M., Newacheck P.W., Perrin J.M., Shonkoff J.P., Strickland B. Anew definition of children with special health care needs. Pediatrics 1998, 102:137-140.
51. McPherson M., Thaniel L., Minniti C.P. Transition of patients with sickle cell disease from pediatric to adult care: Assessing patient readiness. Pediatr Blood Cancer 2009, 52:838-841.
52. Moola E.J., Norman M.E. Down the rabbit hole': Enhancing the transition process for youth with cystic fibrosis and congenital heart disease by re-imagining the future and time. Child Care Health Dev 2011, 37:841-851.
53. Moons P., Pinxten S., Dedroog D., Van Deyk K., Gewillig M., Hilderson D., Budts W. Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. JAdolesc Health 2009, 44:316-322.
54. Newacheck P.W., Inkelas M., Kim S.E. Health services use and health care expenditures for children with disabilities. Pediatrics 2005, 114:79-85.
55. Newacheck P., Halfon N. Prevalence and impact of disabling chronic conditions in childhood. Am J Public Health 1998, 88:610-617.
56. Newman L., Wagner M., Knokey A.M., Marder C., Nagle K., Shaver D., Schwarting M. The Post-high School Outcomes of Young Adults with Disabilities up to 8 Years after High School. A Report from the National Longitudinal Transition Study-s (NLTS2) 2011, SRI International, Menlo Park, CA.
57. Ostlie I.L., Dale O., Moller A. From childhood to adult life with juvenile idiopathic arthritis (JIA): A pilot study. Disabil Rehabil 2007, 29:445-452.
58. O'Sullivan A.K., Sullivan J., Higuchi K., Montgomery A.B. Health care utilization & costs for cystic fibrosis patients. Manag Care 2011, 20(2):37-44.
59. Ouyang L., Grosse S.D., Armour B.S., Waitzman N.J. Health care expenditures of children and adults with spina bifida in a privately insured U.S. population. Birth Defects Res A Clin Mol Teratol 2007, 79:552-558.
60. Pai A.L., Ostendorf H.M. Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: A literature review. Child Health Care 2011, 40:16-33.
61. Pacaud D., Yale J., Stephure D., Trussell R., Davies D. Problems in transition from pediatric care to adult care for individuals with diabetes. Can J Diabetes 2005, 29:13-18.
62. Pickler L., Kellar-Guenther Y., Goldson E. Barriers to transition to adult care for youth with intellectual disabilities. JChild Adolesc Health 2011, 3:575-584.
63. Price C.S., Corbett S., Lewis-Barned N., Morgan J., Oliver E., Dovey-Pearce G. Implementing a transition pathway in diabetes: A qualitative study of the experiences and suggestions of young people with diabetes. Child Care Health Dev 2011, 37:852-860.
64. Quinn C.T., Rogers Z.R., McCavit T.L., Buchanan G.R. Improved survival of children and adolescents with sickle cell disease. Blood 2010, 115:3447-3452.
65. Rapley P., Davidson P.M. Enough of the problem: A review of time for health care transition solutions for young adults with a chronic illness. JClin Nurs 2010, 19:313-323.
66. Reiss J., Gibson R. Health care transition: Destinations unknown. Pediatrics 2002, 110:1307-1314.
67. Reiss J.G., Gibson R.W., Walker L.R. Health care transition: Youth, family, and provider perspectives. Pediatrics 2005, 115(1):112-120.
68. Rettig P., Arthreya B. Adolescents with chronic disease: Transition to adult health care. Arthritis Care Res 1991, 4:174-180.
69. Roebroeck M.E., Jahnsen R., Carona C., Kent R.M., Chamberlain M.A. Adult outcomes and lifespan issues for people with childhood-onset physical disability. Dev Med Child Neurol 2009, 51:670-678.
70. Rutishauser C., Akré C., Suris J.C. Transition from pediatric to adult health care: Expectations of adolescents with chronic disorders and their parents. Eur J Pediatr 2011, 170:865-871.
71. Sawyer S.M., Macnee S. Transition to adult health care for adolescents with spina bifida: Research issues. Dev Disabilities Res Rev 2010, 16:60-65.
72. Scal P., Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 2005, 115:1607-1612. 10.1542/peds.2004-0458.
73. Scott L., Vallis M., Charette M., Murray A., Latta R. Transition of care: Researching the needs of young adults with type 1 diabetes. Can J Diabetes 2005, 29:203-210.
74. Shaw K.L., Southwood T.R., McDonagh J.E. Growing up and moving on in rheumatology: A multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatology 2005, 44:806-812.
75. Shaw K.L., Southwood T.R., McDonagh J.E. Young people's satisfaction of transitional care in adolescent rheumatology in the UK. Child Care Health Dev 2006, 33:368-379.
76. Shojania K.G., Bero L.A. Taking advantage of the explosion of systematic reviews: An efficient MEDLINE search strategy. Eff Clin Pract 2001, 4:157-162.
77. Sices L., Harman J.S., Kelleher K.J. Health-care use and expenditures for children in special education with special health-care needs: Is dual classification a marker for high use?. Public Health Rep 2007, 122:531-540.
78. Singh S.P., Paul M., Ford T., Kramer T., Weaver T., McLaren S., White S. Process, outcome and experience of transition from child to adult mental healthcare: Multi-perspective study. Br J Psychiatry 2010, 197:305-312.
79. Smith V., Devane D., Begley C.M., Clarke M. Methodology in conducting a systematic review. BMC Med Res Methodol 2011, 11(1):15.
80. Stabile L., Rosser L., Porterfield K.M., McCauley S., Levenson C., Haglund J., Christman K. Transfer versus transition: Success in pediatric transplantation brings the welcome challenge of transition. Prog Transplant 2005, 15:363-370.
81. Tuchman L.K., Slap G.B., Britto M.T. Transition to adult care: Experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 2008, 34:557-563.
82. U.S. Department of Health and Human Services. (2012). Retrieved from. http://www.healthcare.gov/.
83. Valenzuela J.M., Buchanan C.L., Radcliffe J., Ambrose C., Hawkins L.A., Tanney M., Rudy B.J. Transition to adult services among behaviorally infected adolescents with HIV-a qualitative study. JPediatr Psychol 2011, 36:134-140.
84. van Staa A.L., Jedeloo S., van Meeteren J., Latour J.M. Crossing the transition chasm: Experiences and recommendations for improving transitional car of young adults, parents and providers. Child Care Health Dev 2011, 37:821-832.
85. van Staa A., van der Stege H.A., Jedeloo S., Moll H.A., Hilberink S.R. Readiness to transfer to adult care of adolescents with chronic conditions: Exploration of associated factors. JAdolesc Health 2011, 48:295-302.
86. Van Walleghem N., MacDonald C.A., Dean H.J. Building connections for young adults with type 1 diabetes mellitus in Manitoba: Feasibility and acceptability of a transition initiative. Chronic Dis Can 2006, 27:130-134.
87. Van Walleghem N., MacDonald C.A., Dean H.J. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care 2008, 31:1529-1530.
88. Vijayan T., Benin A.L., Wagner K., Romano S., Andiman W.A. We never thought this would happen: Transitioning care of adolescents with prenatally acquired HIV infection from pediatrics to internal medicine. AIDS Care 2009, 21:1222-1229.
89. Visentin K., Koch T., Kralik D. Adolescents with type 1 diabetes: Transition between diabetes services. Journal of Clinical Nursing 2006, 15:761-769.
90. Wang G., McGrath B.B., Watts C. Health care transitions among youth with disabilities or special health care needs: An ecological approach. JPediatr Nurs 2010, 25:505-550.
91. Watson R., Parr J.R., Joyce C., May C., Le Couteur A.S. Models of transitional care for young people with complex health needs: A scoping review. Child Care Health Dev 2011, 37:780-791.
92. Wiener L.S., Kohrt B., Battles H.B., Pao M. The HIV experience: Youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol 2011, 36:141-154.
93. Wiener L., Zobel M., Battles H., Ryder C. Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based services: Assessing transition readiness. Social Work in Health Care 2007, 46:1-19.
94. Wolfstadt J., Kaufman A., Levitin J., Kaufman M. The use and usefulness of My Health passport: An online tool for the creation of portable health summary. Int J Child Adolesc Health 2011, 3:499-506.
95. Wong L.H., Chan F.W., Wong F.Y., Wong E.L., Huen K.F., Yeoh E.K., Fok T.F. Transition care for adolescents and families with chronic illnesses. JAdolesc Health 2010, 47:540-546.
96. Wray J., Maynard L. Specialist cardiac services: What do young people want?. Cardiol Young 2008, 18:569-574.
97. Young N.L., Barden W.S., Mills W.A., Burke T.A., Law M., Boydell K. Transition to adult-oriented health care: Perspectives of youth and adults with complex physical disabilities. Phys Occup Ther Pediatr 2009, 29:345-361.
98. Young N., McCormick A., Mills W., Barden W., Boydell K., Law M., Williams J., et al. The transition study: A look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Phys Occup Ther Pediatr 2005, 26:25-45.