Transition of young people with chronic conditions: A cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care

European Journal of Pediatrics

Volumn 173, Issue 8, 2014, Pages 1067-1074

  Rutishauser, Christoph ^a   Sawyer, Susan M ^b,c,d   Ambresin, Anne Emmanuelle ^e  

^a UNIVERSITY CHILDREN S HOSPITAL   (Switzerland)

^b ROYAL CHILDREN'S HOSPITAL   (Australia)

^c UNIVERSITY OF MELBOURNE   (Australia)

^d MURDOCH CHILDREN'S RESEARCH INSTITUTE   (Australia)

^e LAUSANNE UNIVERSITY HOSPITAL   (Switzerland)

Author keywords

Adolescence; Adolescent friendly health care; Chronic disease; Quality health care; Transition to adult health care; Young adults

Indexed keywords

ADOLESCENT; ADULT; ANXIETY; ARTICLE; CHILD HEALTH CARE; CHRONIC DISEASE; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; FEMALE; HEALTH CARE; HEALTH CARE PERSONNEL; HEALTH CARE PLANNING; HUMAN; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; PATIENT ATTITUDE; PERSONAL EXPERIENCE; PRIORITY JOURNAL; TRANSITION TO ADULT CARE; DOCTOR PATIENT RELATION; PATIENT; PSYCHOLOGY; QUESTIONNAIRE; YOUNG ADULT;

ADOLESCENT; ADULT; CHRONIC DISEASE; CROSS-SECTIONAL STUDIES; FEMALE; HUMANS; MALE; PATIENTS; PHYSICIAN-PATIENT RELATIONS; QUESTIONNAIRES; TRANSITION TO ADULT CARE; YOUNG ADULT;

EID: 84904444183     PISSN: 03406199     EISSN: 14321076     Source Type: Journal    
DOI: 10.1007/s00431-014-2291-9     Document Type: Article

References (48)

1. Ambresin A, Bennett K, Patton G, Sanci L, Sawyer S (2013) Assessment of youth-friendly health care: a systematic review of indicators drawn from young people's perspectives. J Adolesc Health 52:670-681
2. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine (2002) A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110:1304-1306
3. Annunziato RA, Emre S, Shneider BL, Barton C, Dugan C, Shemesh E (2007) Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatr Transplant 11:608-614 (Pubitemid 47174384)
4. Anthony S, KaufmanM, Drabble A, Seifert-HansenM, Dipchand A, Martin K (2009) Perceptions of transitional care needs and experiences in pediatric heart transplant recipients. Am J Transplant 9:614-619
5. Blum RW (2002) Improving transition for adolescents with special health care needs from pediatric to adult-centered health care: introduction. Pediatrics 110:1301-1303
6. Blum RW, Garell D, Hodgman C, Jorissen T, Okinow N, Orr D, Slap G (1993) 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 14:570-576 (Pubitemid 23345069)
7. Boyle MP, Farukhi Z, Nosky ML (2001) Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol 32:428-436 (Pubitemid 33121653)
8. Busse F, Hiermann P, Galler A, Stumvoll M, Wiessner T, Kiess W, Kapellen T (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 67:132-138 (Pubitemid 46355586)
9. Callahan S, CooperW(2010) Changes in ambulatory health care use during the transition to young adulthood. J Adolesc Health 46:407-413
10. Casey BJ, Jones RM, Hare TA (2008) The adolescent brain. Ann NY Acad Sci 1124:111-126 (Pubitemid 351506787)
11. Chaturvedi S, Jones C, Walker R, Sawyer S (2009) The transition of kidney transplant recipients: a work in progress. Pediatr Nephrol 24:1055-1060
12. Chaudhry S, Keaton M, Nasr S (2013) Evaluation of a cystic fibrosis transition program from pediatric to adult care. Pediatr Pulmonol 48:658-665
13. Council on Child and Adolescent Health (1988) Age limits of pediatrics. Pediatrics 81:736
14. Crowley R, Wolfe I, Lock K, McKee M (2011) Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 96:548-553
15. David T (2001) Transition from the paediatric clinic to the adult service. J R Soc Med 94:373-374
16. 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 Community 13:409-419 (Pubitemid 41137419)
17. Duguépéroux I, Tamalet A, Sermet-Gaudelus I, Le Bourgeois M, Gérardin M, Desmazes-Dufeu N, Hubert D (2008) Clinical changes of patients with cystic fibrosis during transition from pediatric to adult care. 43:459-465
18. Ercan O, Alikasifoglu M, Erginoz E, Janda J, Kabicek P, Rubino A, Constantinopoulos A, Ilter O, Vural M (2009) Demography of adolescent health care delivery and training in Europe. Eur J Pediatr 168:417-426
19. Foster B, Platt R, Dahhou M, Zhang X, Bell L, Hanley J (2011) The impact of age at transfer from pediatric to adult-oriented care on renal allograft survival. Pediatr Transplant 15:750-759
20. Kennedy A, Sloman F, Douglass J, Sawyer S (2007) Young people with chronic illness: the approach to transition. InternMed J 37:555-560 (Pubitemid 47084185)
21. Kipps S, Bahu T, Ong K, Ackland F, Brown R, Fox C, Griffin N, Knight A, Mann N, Neil H, Simpson H, Edge J, Dunger D (2002) Current methods of transfer of young people with type 1 diabetes to adult services. Diabet Med 19:649-654 (Pubitemid 34985165)
22. Koshy S, Hebert D, Lam K, Stukel T, Guttmann A (2009) Renal allograft loss during transition to adult healthcare services among pediatric renal transplant patients. Transplantation 87:1733-1736
23. LaRosa C, Glah C, Baluarte H, Meyers K (2011) Solid-organ transplantation in childhood: transitioning to adult health care. Pediatrics 127:742-753
24. Litt I (1998) Age limits of pediatrics, American Academy of Pediatrics, Council on Child Health, Pediatrics, 1972;49:463. Pediatrics 102:249-250
25. Lugasi T, Achille M, Stevenson M (2011) Patients' perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health 48:429-440
26. McDonagh J (2007) Transition of care from paediatric to adult rheumatology. Arch Dis Child 92:802-807
27. McLaughlin S, Diener-West M, Indurkhya A, Rubin H, Heckmann R, BoyleM(2008) Improving transition frompediatric to adult cystic fibrosis care: lessons from a national survey of current practices. Pediatrics 121:e1160-e1166
28. Miles K, Edwards S, ClapsonM(2004) Transition from paediatric to adult services: experiences of HIV-positive adolescents. AIDS Care 16:305-314 (Pubitemid 38478926)
29. Moons P, Pinxten S,Dedroog D,Van Deyk K,GewilligM, Hilderson D, BudtsW(2009) Expectations and experiences of adolescents with congenital heart disease on being transferred from pediatric cardiology to an adult congenital heart disease program. J Adolesc Health 44:316-322
30. Pacaud D, Yale JF, Stephure D, Trussell R, Davies HD (2005) Problems in transition frompediatric care to adult care for individuals with diabetes. Can J Diabetes 29:13-18 (Pubitemid 43733694)
31. Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD (2004) Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics 113:e197-e205
32. Reiss J, Gibson R, Walker L (2005) Health care transition: youth, family, and provider perspectives. Pediatrics 115:112-120 (Pubitemid 43046289)
33. Rosen DS (2004) Transition of young people with respiratory diseases to adult health care. Paediatr Respir Rev 5:124-131
34. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM (2003) Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health 33:309-311
35. Rutishauser C, Akre C, Suris JC (2011) Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents. Eur J Pediatr 170:865-871
36. Sawyer S, Drew S, Yeo M, Britto M (2007) Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369:1481-1489 (Pubitemid 46635756)
37. Sawyer S, Proimos J, Towns S (2010) Adolescent-friendly health services: what have children's hospitals got to do with it? J Paediatr Child Health 46:214-216
38. Sawyer SM, Aroni RA (2003) Sticky issue of adherence. J Paediatr Child Health 39:2-5 (Pubitemid 36238122)
39. Sawyer SM, Blair S, Bowes G (1997) Chronic illness in adolescents: transfer or transition to adult services? J Paediatr Child Health 33:88-90 (Pubitemid 27223789)
40. Scott L,Vallis M, CharetteM, Murray A, Latta R (2005) Transition of care: researching the needs of young adults with type 1 diabetes. Can J Diabetes 29:203-210 (Pubitemid 43741136)
41. Sonneveld H, Strating M, van Staa A, Nieboer A (2012) Gaps in transitional care: what are the perceptions of adolescents, parents and providers? Child Care Health Dev 39:69-80
42. Stinson J, Kohut S, Spiegel L, White M, Gill N, Colbourne G, Sigurdson S, Duffy K, Tucker L, Stringer E, Hazel B, Hochman J, Reiss J, Kaufman M (2013) A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int J Adolesc Med Health 6:1-16. doi:10.1515/ijamh-2013-0512
43. Tuchman L, Slap G, Britto M (2008) Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev 34:557-563
44. Valenzuela J, Buchanan C, Radcliffe J, Ambrose C, Hawkins L, TanneyM, Rudy B (2011) Transition to adult services among behaviorally infected adolescents with HIV-a qualitative study. J Pediatr Psychol 36:134-140
45. 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 48:295-302
46. van Staa A, Jedeloo S, van Meeteren J, Latour J (2011) Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev 37:821-832
47. Viner R (2008) Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch Dis Child 93:160-163
48. Wiener L, Kohrt B, Battles H, Pao M (2011) The HIV experience: youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol 36:141-154