Uncharted Territory: Systematic Review of Providers' Roles, Understanding, and Views Pertaining to Health Care Transition

Journal of Pediatric Nursing

Volumn 30, Issue 5, 2015, Pages 732-747

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

^a EAST TENNESSEE STATE UNIVERSITY   (United States)

^b UNIVERSITY OF SOUTHERN CALIFORNIA   (United States)

^c UNIVERSITY OF NEW MEXICO   (United States)

Author keywords

Adolescents and emerging adults; Health care transition; Special health care needs; Systematic review

Indexed keywords

ADOLESCENT; ADULT; CHILD; COMPREHENSION; FEMALE; HEALTH CARE DELIVERY; HEALTH CARE PERSONNEL; HEALTH SERVICE; HUMAN; INTERDISCIPLINARY COMMUNICATION; MALE; ORGANIZATION AND MANAGEMENT; OUTCOME ASSESSMENT; PATIENT CARE; PROGRAM DEVELOPMENT; PROGRAM EVALUATION; QUALITATIVE RESEARCH; ROLE PLAYING; TRANSITION TO ADULT CARE; YOUNG ADULT;

ADOLESCENT; ADULT; CHILD; COMPREHENSION; DELIVERY OF HEALTH CARE; FEMALE; HEALTH PERSONNEL; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; INTERDISCIPLINARY COMMUNICATION; MALE; OUTCOME ASSESSMENT (HEALTH CARE); PATIENT-CENTERED CARE; PROGRAM DEVELOPMENT; PROGRAM EVALUATION; QUALITATIVE RESEARCH; ROLE; TRANSITION TO ADULT CARE; YOUNG ADULT;

EID: 84940893448     PISSN: 08825963     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pedn.2015.05.030     Document Type: Review

References (89)

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 of Physicians-American Society of Internal Medicine A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002, 110:1304-1306.
3. 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.
4. Barendse R.M., de Kerk D.J., Kindermann A., Fishman L.N., Grand R.J., Bartelsman J.F., et al. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: A survey of Dutch adult gastroenterologists' perspectives. International Journal of Child and Adolescent Health 2011, 3:609-616.
5. Begley T. Transition to adult care for young people with long-term conditions. British Journal of Nursing 2013, 22:508-511.
6. Bell L. Adolescent dialysis patient transition to adult care: A cross-sectional survey. Pediatric Nephrology 2007, 22:720-726.
7. Betz C.L. Health care transition planning for adolescents with special health care needs: Where's nursing?. Nursing Outlook 2013, 61:258-265.
8. Betz C.L., Nehring W., Lobo M., Bui K. Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition. Nursing Outlook 2013, 61:311-336.
9. Betz C.L., Smith K.N. Measuring health care transition planning outcomes: Challenges and issues. International Journal of Child and Adolescent Health 2010, 3:463-472.
10. Binks J.A., Barden W.S., Burke T.A., Young N.L. What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida. Archives of Physical Medicine & Rehabilitation 2007, 88:1064-1073.
11. Bhaumik S., Watson J., Barrett M., Raju B., Burton T., Forte J. Transition for teenagers with intellectual disability: Carers' perspectives. Journal of Policy and Practice in Intellectual Disabilities 2011, 8:53-61.
12. Bloom S.R., Kuhlthau K., Van Cleave J., Knapp A.A., Newacheck P., Perrin J.M. Health care transition for youth with special health care needs. Journal of Adolescent Health 2012, 51:213-219. 10.1016/j.jadohealth.2012.01.007.
13. 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. International Journal of Child and Adolescent Health 2011, 3:517-526.
14. Bryant R., Walsh T. Transition of the chronically ill youth with hemoglobinopathy to adult health care: An integrative review of the literature. Journal of Pediatric Health Care 2009, 23:37-48. 10.1016/j.pedhc.2008.04.009.
15. Burke R., Spoerri M., Price A., Cardosi A.M., Flanagan P. Survey of primary care pediatricians on the transition and transfer of adolescents to adult healthcare. Clinical Pediatrics 2008, 47:347-354. 10.1177/0009922807310938.
16. Camfield P.R., Gibson P.A., Douglass L.M. Strategies for transitioning to adult care for youth with Lennox Castuat syndrome and related disorders. Epilepsia 2011, 52:21-27. 10.1111/j.1528-1167.2011.03179.x.
17. Christie D., Viner R. Chronic illness and transition: Time for action. Adolescent Medicine: State of the Art Reviews 2009, 20:981-987.
18. 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. The Canadian Journal of Cardiology 2009, 25:e317-e322.
19. Collins S.W., Reiss J., Saidi A. Transition of care: What is the pediatric hospitalist's role? An exploratory survey of current attitudes. Journal of Hospital Medicine 2012, 7:277-281. 10.1002/jhm.936.
20. Crowley R., Wolfe I., Lock K., McKee M. Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood 2011, 96:548-553. 10.1136/adc.2010.202473.
21. Darrah J., Wiart L., Magill-Evans J., Ray L., Anderson J. Are family-centered principles, functional goal setting and transition planning evident in therapy services for children with cerebral palsy. Child: Care, Health and Development 2010, 38:41-47. 10.1111/j.1365-2214.2010.01160x.
22. Davis M., Geller J.L., Hunt B. Within-state availability of transition-to-adulthood services to youths with serious mental health conditions. Psychiatric Services 2006, 57:1594-1599.
23. Davis M., Sondheimer D.L. State child mental health efforts to support youth in transition to adulthood. Journal of Behavioral Health Services & Research 2005, 32:27-42.
24. de Beaufort C., Jarosz-Chobot P., Frank M., de Bart J., Deja G. Transition from pediatric to adult diabetes care: Smooth or slippery?. Pediatric Diabetes 2010, 11:24-27. 10.1111/j.1399-5448.2009.00524.x.
25. DeBaun M.R., Telfair J. Transition and sickle cell disease. Pediatrics 2012, 130:926-935. 10.1542/peds.2011-3049.
26. Dobson J.V., Bryce L., Glaeser P.W., Losek J.D. Age limits and transition of health care in pediatric emergency medicine. Pediatric Emergency Care 2007, 23:294-297.
27. Dupuis F., Duhamel F., Gendron S. Transitioning care of an adolescent with cystic fibrosis: Development of systemic hypothesis between parents, adolescents, and health care professionals. Journal of Family Nursing 2011, 17:291-311. 10.1177/1074840711414907.
28. Fair C.D., Sullivan K., Gatto A. Best practices in transitioning youth with HIV: Perspectives of pediatric and adult infectious disease care providers. Psychology, Health & Medicine 2010, 15:515-527. 10.1080/13548506.2010.493944.
29. Fair C.D., Sullivan K., Gatto A. Indicators of transition success for youth living with HIV: Perspectives of pediatric and adult infectious disease care providers. AIDS Care 2011, 23:965. 10.1080/09540121.2010.542449.
30. Fernandes S., Fishman L., O'Sullivan-Oliveira J., Ziniel S., Melvin P., Khairy P., et al. Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. International Journal of Child and Adolescent Health 2011, 3:507-515.
31. Fernandes S.M., Khairy P., Fishman L., Melvin P., O'Sullivan-Oliveira J., Sawicki G., et al. Referral patterns and perceived barriers to adult congenital heart disease care: Results of a survey of U.S. pediatric cardiologists. Journal of the American College of Cardiology 2012, 60:2411-2418. 10.1016/j.jacc.2012.09.015.
32. Flume P.A., Taylor L.A., Anderson D.L., Gray S., Turner D. Transition programs in cystic fibrosis centers: Perceptions of team members. Pediatric Pulmonology 2004, 37:4-7.
33. Freed G.L., Hudson E.J. Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions. Journal of Pediatrics 2006, 148:824-827. 10.1016/j.peds.2006.02010.
34. Gilliam P.P., Ellen J.M., Leonard L., Kinsman S., Jevitt C.M., Straub D.M. Transition of adolescents with HIV to adult care: Characteristics and current practices of the adolescent trials network for HIV/AIDS interpretation. Journal of Association of Nurses AIDS Care 2011, 22:283-294. 10.1016/j.jana.2010.04.003.
35. Gleeson H., Turner G. Transition to adult services. Archives of Disease in Childhood Education and Practice 2012, 97:86-92.
36. Hait E.J., Barendse R.M., Arnold J.H., Valim C., Sands B.E., Korzenik J.R., et al. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: A survey of adult gastroenterologists. Journal of Pediatric Gastroenterology and Nutrition 2009, 48:61-65. 10.1097/MPG.0b013e31816d71d8.
37. Harden P.N., Walsh G., Bandler N., Bradley S., Lonsdale D., Taylor J., et al. Bridging the gap: An integrated paediatric to adult clinical service for young adults with kidney failure. BMJ 2012, 344:e3718. 10.1136/bmj.e3718.
38. 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. Journal of Pediatric Psychology 2011, 36:172-178. 10.1093/jpepsy/jsq091.
39. Hilderson D., Saidi A.S., Van Deyk K., Verstappen A., Kovacs A.H., Fernandes S.M., et al. Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe. Pediatric Cardiology 2009, 30:786-793. 10.1007/s00246-009-9442-1.
40. Iles N., Lowton K. What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?. Health & Social Care in the Community 2010, 18:21-29. 10.1111/j.1365-2524.2009.00871.x.
41. Ishizaki Y., Maru M., Higashino H., Katsumoto S., Egawa K., Yanagimoto Y., et al. The transition of adult patients with childhood-onset chronic diseases from pediatric to adult health care systems: A survey of the perceptions of Japanese pediatricians and child health nurses. BioPsychoSocial Medicine 2012, 6:8. 10.1186/1751-0759-6-8.
42. 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. Pediatric Nursing 2009, 35:381-387.
43. Kingsnorth S., Lindsay S., Maxwell J., Tsybina I., Seo H., Macarthur C., et al. Implementation of the LIFE span model of transition care for youth with childhood-onset disabilities. International Journal of Child and Adolescent Health 2011, 3:547-559.
44. Kirk J., Clayton P. Specialist services and transitional care in paediatric endocrinology in the UK and Ireland. Clinical Endocrinology 2007, 65:59-63.
45. Koshy S.M., Herbet D., Lam K., Stukel T.A., Guttman A. Renal allograft loss during transition to adult healthcare services among pediatric renal transplant patients. Transplantation 2009, 87:1733-1736. 10.1097/TP.0b013e3181a63ed9.
46. Lerret S.M., Menendez J., Weckwerth J., Lokar J., Mitchell J., Alonso E. Essential components of transition to adult transplant services: The transplant coordinators' perspective. Progress in Transplantation 2012, 22:252-258.
47. LoCasale-Crouch J., Johnson B. Transition from pediatric to adult medical care. Advances in Chronic Kidney Disease 2005, 12:412-417.
48. Lundin C.S., Danielson E., Ohrn I. Handling the transition of adolescents with diabetes: Participant observations and interviews with care providers in paediatric and adult diabetes outpatient clinics. International Journal of Integrative Care 2007, 7. e05.
49. Surgeon General's Conference: Growing up and getting medical care: Youth with special health care needs: A summary of conference proceedings 1989, (Retrieved from http://profiles.nlm.nih.gov/ps/access/NNBCZS.pdf). P.R. Magrab, H.E.C. Millar (Eds.).
50. Malmood D., Dicianno B., Bellin M. Self-management, preventable conditions and assessment of care among young adults with myelomeningocele. Child: Care, Health and Development 2011, 37:861-865. 10.1111/j.1365-2214.2011.01299.x.
51. Marcer H., Finlay F., Baverstock A. ADHD and transition to adult services - The experience of community paediatricians. Child: Care, Health and Development 2008, 34:564-566. 10.1111/j.1365-2214.2008.00857.x.
52. McDonagh J.E., Shaw K.L., Southwood Growing up and moving on in rheumatology: Development and preliminary evaluation of a transitional care programme for a multicenter cohort of adolescents with juvenile idiopathic arthritis. Journal of Child Health Care 2006, 10:22-42.
53. McDonagh J.E., Southwood T.R., Shaw K.L., British Paediatric Rheumatology Group Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care. Rheumatology 2004, 43:737-743.
54. McLaughlin S., Diener-West M., Indurkhya A., Rubin H., Heckmann R., Boyle M. Improving transition from pediatric to adult cystic fibrosis care: Lessons from a national survey of current practices. Pediatrics 2008, 121:e1160-e1166. 10.1542/peds.2007-2217.
55. McPheeters M., Davis A.M., Taylor J.L., Brown R.F., Potter S.A., Epstein R.A. Transition care for children with special health needs. Technical brief No. 15 (Prepared by the Vanderbilt University Evidence-based Practice Center under Contract No. 290-2012-00009-1) AHRQ Publication No. 14-EHC027-EF 2014, Agency for Healthcare Research and Quality, Rockville, MD, (www.effectivehealthcare.ahrqu.gov/report/final.cfm).
56. Moher D., Liberati A., Tetzlaff J., Altman D.G., The PRISMA Group Preferred reporting items for systematic reviews and meta-analyses: The PRISMA Statement. PLoS Medicine 2009, 6:e1000097. 10.1371/journal.pmed1000097.
57. Nishikawa B.R., Daaleman T.P., Nageswaran S. Association of provider scope of practice with successful transition for youth with special healthcare needs. The Journal of Adolescent Health 2011, 48:209-211.
58. Okumura M.J., Heisler M., Davis M.M., Cabana M.D., Demonner S., Kerr E.A. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. Journal of General Internal Medicine 2008, 23:1621-1627. 10.1007/s11606-008-0716-8.
59. Okumura M.J., Kerr E.A., Cabana M.D., Davis M.M., Demonner S., Heisler M. Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics 2010, 125:e748-e754. 10.1542/peds.2008-3451.
60. Olds J., Fitzpatrick E., Séguin C., Moran L., Whittingham J., Schramm D. Facilitating the transition from the pediatric to adult cochlear implant setting: Perspectives of CI professionals. Cochlear Implants International 2012, 13:197-205. 10.1179/1754762811Y.0000000033.
61. Ostlie I.L., Dale O., Moller A. From childhood to adult life with juvenile idiopathic arthritis (JIA): A pilot study. Disability and Rehabilitation 2007, 29:445-452.
62. Packel L., Sood M., Gormley M., Hayden R. A pilot study exploring the role of physical therapists and transition in care of pediatric patients with cystic fibrosis to the adult setting. Cardiopulmonary Physical Therapy Journal 2013, 24:24-30.
63. 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. Children's Health Care 2011, 40:16-33. 10.1080/02739615.2011.537934.
64. Patel M.S., O'Hare K. Residency training in transition of youth with childhood-onset chronic disease. Pediatrics 2010, 126:S190-S193. 10.1542/peds.2010-1466P.
65. Peter N.G., Forke C.M., Ginsburg K.R., Schwarz D.F. Transition from pediatric to adult care: Internists' perspectives. Pediatrics 2009, 123:417-423. 10.1542/peds.2008-0740.
66. Pickler L., Kellar-Guenther Y., Goldson E. Barriers to transition to adult care for youth with intellectual disabilities. Journal of Child and Adolescent Health 2011, 3:575-584.
67. Por J., Golberg B., Lennox V., Burr P., Barrow J., Dennard L. Transition of care: Health care professionals' view. Journal of Nursing Management 2004, 12:354-361.
68. Price C.S., Corbett S., Dovey-Pearce G. Barrier and facilitators to implementing a transition pathway for adolescents with diabetes: A health professional's perspective. International Journal of Child and Adolescent Health 2011, 3:489-498.
69. 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. Journal of Clinical Nursing 2010, 19:313-323. 10.1111/j.1365-2702.2009.03027.x.
70. Reiss J.G., Gibson R.W., Walker L.R. Health care transition: Youth, family and provider perspectives. Pediatrics 2005, 115:112-120.
71. Repetto J.B., Gibson R.W., Lubbers J., Gritz S.H., Reiss J. A statewide study of knowledge and attitudes regarding health care transition. Career Development for Exceptional Individuals 2008, 31:5-13.
72. Saidi A., Reiss J., Breitinger P., Black E., Paolillo J., Collins S. Web-based learning: Is it an effective method for educating pediatric residents about transition to adult subspecialty congenital heart disease care?. International Journal of Child and Adolescent Health 2011, 3:585-593.
73. Sawicki G.S., Whitworth R., Gunn L., Butterfield R., Lukens-Bull K., Wood D. Receipt of health care transition counseling in the national survey of adult transition and health. Pediatrics 2011, 128:e521-529.
74. Sawyer S.M., Macnee S. Transition to adult health care for adolescents with spina bifida: Research issues. Developmental Disabilities Research Reviews 2010, 16:60-65. 10.1002/ddrr.98.
75. Schwartz L.A., Brumley L.D., Tuchman L.K., Barakat L.P., Hobbie W.L., Ginsberg J.P., et al. Stakeholder validation of a model of readiness for transition to adult care. JAMA Pediatrics 2013, 167:939-946. 10.1001/jamapediatrics.2013.2223.
76. Shaw K.L., Southwood T.R., McDonagh J.E., British Paediatric Rheumatology Group Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: Results of a postal survey. Rheumatology 2004, 43:211-219. 10.1093/rheumatology/keh018.
77. Shaw K.L., Southwood T.R., McDonagh J.E., British Paediatric Rheumatology Group Transitional care for adolescents with juvenile idiopathic arthritis: A Delphi study. Rheumatology 2004, 43:1000-1006. 10.1093/rheumatology/keh216.
78. Singh S.P., Paul M., Ford T., Kramer T., Weaver T., McLaren S., et al. Process, outcome and experience of transition from child to adult mental healthcare: Multi-perspective study. The British Journal of Psychiatry 2010, 197:305-312. 10.1192/bjp.bp.109.075135.
79. Sobota A., Neufeld E.J., Sprinz P., Heeney M.M. Transition from pediatric to adult care for sickle cell disease: Results of a survey of pediatric providers. American Journal of Hematology 2011, 86:512-515. 10.1002/ajh.22016.
80. Sonneveld H.M., Strating M.M., van Staa A.L., Nieboer A.P. Gaps in transitional care: What are the perceptions of adolescents, parents and providers?. Child: Care, Health & Development 2013, 39:69-80. 10.1111/j.1365-2214.2011.01354.x.
81. Steinbeck K.S., Brodie L., Towns S.J. Transition in chronic illness: Who is going where?. Journal of Paediatrics and Child Health 2008, 44:478-482. 10.1111/j.1440-1754.2008.01321.x.
82. Stendahl G., Bobay K., Berger S., Zangwill S. Organizational structure and processes in pediatric heart transplantation: A survey of practices. Pediatric Transplantation 2012, 16:257-264.
83. Suris J.C., Akre C., Rutishauser C. How adult specialists deal with the principles of a successful transition. The Journal of Adolescent Health 2009, 45:551-555. 10.1016/j.jadohealth.2009.05.011.
84. Telfair J., Alexander L.R., Loosier P.S., Alleman-Velez P.L., Simmons J. Providers' perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease. Journal of Health Care for the Poor & Underserved 2004, 15:443-461.
85. 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 and Development 2011, 37:821-832. 10.1111/j.1365-2214.2011.01261.x.
86. 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.
87. Wang G., McGrath B.B., Watts C. Health care transitions among youth with disabilities or special health care needs: An ecological approach. Journal of Pediatric Nursing 2010, 25:505-550. 10.1016/j.pedn.2009.07.003.
88. 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 and Development 2011, 37:780-791. 10.1111/j.1365-2214.2011.01293.x.
89. Williams T.S., Sherman E.M.S., Dunseith C., Mah J.K., Blackman M., Latter J., et al. Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs. International Journal of Child and Adolescent Health 2011, 3:527-535.