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Published in: European Journal of Pediatrics 3/2013

01-03-2013 | Review

Adolescent views on transition in diabetes and nephrology

Published in: European Journal of Pediatrics | Issue 3/2013

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Abstract

Managing the transition of adolescents from paediatric to adult care is complex and remains an important challenge. This aim of this study was to synthesize studies on perspective on transition to adult care among young people with diabetes or chronic kidney disease. We conducted a systematic review of surveys and qualitative studies that explored adolescent perspectives on transition to adult care in diabetes and chronic kidney disease. Searches were conducted to week 4, June 2010. For quantitative questionnaires, all items were mapped into a domain schema. Thematic synthesis of the qualitative findings was performed. Fourteen studies involving 854 respondents were included. The majority of participants felt somewhat prepared but had reservations about transfer. Five major themes were identified: (1) preparedness (timing of transfer, access to providers, parental involvement), (2) overwhelmed by an impersonal environment in adult service (sterile and unwelcoming, navigating new processes, feeling displaced), (3) independence (developing self-esteem and an adult identity, taking responsibility and ownership), (4) valuing familiarity (building trust, peer support) and (5) service and information needs (leniency, lack of access, efficiency, information needs). Conclusion Holistic and adolescent focussed transition programs are needed which address adolescent needs by providing adequate access to health services, encouraging independence and ownership of health management, promoting trust in providers, giving comprehensive information about what to expect and how to navigate adult services and facilitating interaction with younger patients.
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Literature
1.
go back to reference Anthony SJ, Kaufman M, Drabble A, Siefert-Hansen M, Dipchand AI, Martin K (2009) Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant 9:614–619CrossRefPubMed Anthony SJ, Kaufman M, Drabble A, Siefert-Hansen M, Dipchand AI, Martin K (2009) Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant 9:614–619CrossRefPubMed
2.
go back to reference Bernard RS, Li L, Maxey D, Howlett J, Wolffs S, Sarwal M, Shaw R (2006) Transition from pediatric to adult-centered care: patients’ perception of the transfer process [abstract]. Transplant 82(1):597 Bernard RS, Li L, Maxey D, Howlett J, Wolffs S, Sarwal M, Shaw R (2006) Transition from pediatric to adult-centered care: patients’ perception of the transfer process [abstract]. Transplant 82(1):597
3.
go back to reference Boynton PM (2004) Hands on guide to questionnaire research. Administering, analysing and reporting your questionnaire. Br Med J 328:1372–1375CrossRef Boynton PM (2004) Hands on guide to questionnaire research. Administering, analysing and reporting your questionnaire. Br Med J 328:1372–1375CrossRef
4.
go back to reference Braj B, Picone G, Cross N, Pearlman L (1999) The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis centre. CANNT 41(9):41–46 Braj B, Picone G, Cross N, Pearlman L (1999) The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis centre. CANNT 41(9):41–46
5.
go back to reference Busse FP, Hiermann P, Galler A, Stumvoll M, Wiessner T, Kiess W, Kapellen TM (2007) 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 67:132–138CrossRefPubMed Busse FP, Hiermann P, Galler A, Stumvoll M, Wiessner T, Kiess W, Kapellen TM (2007) 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 67:132–138CrossRefPubMed
6.
go back to reference Chaturvedi S, Jones CL, Walker RG, Sawyer SM (2009) The transition of kidney transplant recipients: a work in progress. Pediatr Nephrol 24:1055–1060CrossRefPubMed Chaturvedi S, Jones CL, Walker RG, Sawyer SM (2009) The transition of kidney transplant recipients: a work in progress. Pediatr Nephrol 24:1055–1060CrossRefPubMed
7.
go back to reference Court JM (1991) Outpatient-based transition services for youth. Pediatrician 19:150–156 Court JM (1991) Outpatient-based transition services for youth. Pediatrician 19:150–156
8.
9.
go back to reference Cushing CC, Steele RG (2010) A meta-analytic review of eHealth interventions for pediatric health promoting and maintaining behaviors. J Pediatr Psychol 35:937–949CrossRefPubMed Cushing CC, Steele RG (2010) A meta-analytic review of eHealth interventions for pediatric health promoting and maintaining behaviors. J Pediatr Psychol 35:937–949CrossRefPubMed
10.
go back to reference Dovey-Pearce G, Hurrell R, May C, Walker C, Doherty Y (2005) Young adults’ (16–25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health Soc Care Comm 13(5):409–419CrossRef Dovey-Pearce G, Hurrell R, May C, Walker C, Doherty Y (2005) Young adults’ (16–25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study. Health Soc Care Comm 13(5):409–419CrossRef
11.
go back to reference Eiser C, Flynn M, Green E, Havermans T, Kirby R, Sandeman D, Tooke JE (1993) Coming of age with diabetes: patients’ views of a clinic for under 25 year olds. Diabet Med 10:285–289CrossRefPubMed Eiser C, Flynn M, Green E, Havermans T, Kirby R, Sandeman D, Tooke JE (1993) Coming of age with diabetes: patients’ views of a clinic for under 25 year olds. Diabet Med 10:285–289CrossRefPubMed
12.
go back to reference Fleming E (2002) The transition of adolescents with diabetes from the children’s health care service into the adult health care service: a review of the literature. J Clin Nurs 11:560–567CrossRefPubMed Fleming E (2002) The transition of adolescents with diabetes from the children’s health care service into the adult health care service: a review of the literature. J Clin Nurs 11:560–567CrossRefPubMed
13.
go back to reference Franklin VL, Waller A, Pagliari C, Greene SA (2006) A randomized controlled trial of Sweet talk, a text-messaging system to support young people with diabetes. Diabet Med 23(12):1332–1338CrossRefPubMed Franklin VL, Waller A, Pagliari C, Greene SA (2006) A randomized controlled trial of Sweet talk, a text-messaging system to support young people with diabetes. Diabet Med 23(12):1332–1338CrossRefPubMed
14.
go back to reference Harden P, Lonsdale D, Bandler N, Davies K (2010) Interactive model of peer support of young adult transplant recipients: the Starbucks factor (015.07). In: XXIII International Congress, Vancouver, Canada Harden P, Lonsdale D, Bandler N, Davies K (2010) Interactive model of peer support of young adult transplant recipients: the Starbucks factor (015.07). In: XXIII International Congress, Vancouver, Canada
15.
go back to reference Harden PN, Nadine P (2006) Pediatric to adult transition: a personal experience. Prog Transplant 16(4):324–328PubMed Harden PN, Nadine P (2006) Pediatric to adult transition: a personal experience. Prog Transplant 16(4):324–328PubMed
16.
go back to reference Henderson T, Friedman DL, Meadows AT (2010) Childhood cancer survivors: transition to adult-focused risk-based care. Pediatr 126(1):129–136CrossRef Henderson T, Friedman DL, Meadows AT (2010) Childhood cancer survivors: transition to adult-focused risk-based care. Pediatr 126(1):129–136CrossRef
17.
go back to reference Leung WC (2001) How to conduct a survey. Student BMJ 9:143–145 Leung WC (2001) How to conduct a survey. Student BMJ 9:143–145
18.
go back to reference McDonagh JE (2004) Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant 9:362–372 McDonagh JE (2004) Growing up and moving on: transition from pediatric to adult care. Pediatr Transplant 9:362–372
19.
go back to reference Nakhla M, Daneman D, Frank M, Guttman A (2008) Translating transition: a critical review of the diabetes literature. J Pediatr Endocrinol 21(6):507–516 Nakhla M, Daneman D, Frank M, Guttman A (2008) Translating transition: a critical review of the diabetes literature. J Pediatr Endocrinol 21(6):507–516
20.
go back to reference Nakhla M, Daneman D, To T, Paradis G, Guttman A (2009) Transition to adult care for youths with diabetes mellitus: findings from a universal health care system. Pediatr 124(6):e1134–e1141CrossRef Nakhla M, Daneman D, To T, Paradis G, Guttman A (2009) Transition to adult care for youths with diabetes mellitus: findings from a universal health care system. Pediatr 124(6):e1134–e1141CrossRef
21.
go back to reference Pacaud D, McConnell B, Huot C, Aebi C, Yale JF (1996) Transition from pediatric care to adult care for insulin-dependent diabetes patients. Can J Diabetes Care 20(4):14–20 Pacaud D, McConnell B, Huot C, Aebi C, Yale JF (1996) Transition from pediatric care to adult care for insulin-dependent diabetes patients. Can J Diabetes Care 20(4):14–20
22.
go back to reference Pacaud D, Yale JF, Stephure D, Trussell R, Davies HD (2005) Problems in transition from pediatric care to adult care for individuals with diabetes. Can J Diabetes 29(1):13–18 Pacaud D, Yale JF, Stephure D, Trussell R, Davies HD (2005) Problems in transition from pediatric care to adult care for individuals with diabetes. Can J Diabetes 29(1):13–18
23.
go back to reference Reiss JG, Gibson RW, Walker LR (2005) Health care transition: youth, family, and provider perspectives. Pediatr 115:112–120CrossRef Reiss JG, Gibson RW, Walker LR (2005) Health care transition: youth, family, and provider perspectives. Pediatr 115:112–120CrossRef
24.
go back to reference Remorino R, Taylor J (2006) Smoothing things over: the transition from pediatric to adult care for kidney transplant recipients. Prog Transplant 16(4):303–308PubMed Remorino R, Taylor J (2006) Smoothing things over: the transition from pediatric to adult care for kidney transplant recipients. Prog Transplant 16(4):303–308PubMed
25.
go back to reference Sawyer SM, Drew S, Yeo MS, Britto MT (2007) Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369(9571):1481–1489CrossRefPubMed Sawyer SM, Drew S, Yeo MS, Britto MT (2007) Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369(9571):1481–1489CrossRefPubMed
26.
go back to reference Scott L, Vallis M, Charette M, Murray A, Latta R (2005) Transition of care: researching the needs of young adults with type 1 diabetes. Can J Diabetes 29(3):203–210 Scott L, Vallis M, Charette M, Murray A, Latta R (2005) Transition of care: researching the needs of young adults with type 1 diabetes. Can J Diabetes 29(3):203–210
27.
go back to reference Soanes C, Timmons S (2004) Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care 8:102–112CrossRefPubMed Soanes C, Timmons S (2004) Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care 8:102–112CrossRefPubMed
28.
go back to reference van Staa A, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR (2011) Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health 48:295–302CrossRefPubMed van Staa A, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR (2011) Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health 48:295–302CrossRefPubMed
29.
go back to reference Steinbeck KS, Brodie L, Towns SJ (2008) Transition in chronic illness: who is going where? J Paediatr Child Health 44(9):478–782CrossRefPubMed Steinbeck KS, Brodie L, Towns SJ (2008) Transition in chronic illness: who is going where? J Paediatr Child Health 44(9):478–782CrossRefPubMed
30.
go back to reference Thomas J, Harden A (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 8:45CrossRefPubMed Thomas J, Harden A (2008) Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol 8:45CrossRefPubMed
31.
go back to reference Tong A, Sainsbury P, Craig JC (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health care 19:349–357CrossRefPubMed Tong A, Sainsbury P, Craig JC (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health care 19:349–357CrossRefPubMed
32.
go back to reference Visentin K, Koch T, Kralik D (2006) Adolescents with type 1 diabetes: transition between diabetes services. Diabetes 15:761–769 Visentin K, Koch T, Kralik D (2006) Adolescents with type 1 diabetes: transition between diabetes services. Diabetes 15:761–769
33.
go back to reference Watson AR (2005) Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol 20(2):113–117CrossRefPubMed Watson AR (2005) Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol 20(2):113–117CrossRefPubMed
Metadata
Title
Adolescent views on transition in diabetes and nephrology
Publication date
01-03-2013
Published in
European Journal of Pediatrics / Issue 3/2013
Print ISSN: 0340-6199
Electronic ISSN: 1432-1076
DOI
https://doi.org/10.1007/s00431-012-1725-5

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