When should young people with chronic rheumatic disease move from paediatric to adult-centred care?

References 

1. Packham JC, Hall MA. Long term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome. Rheumatic. 2002;41:1428–1435
2. Rosen DS. Growing up: health care for adolescents and young adults with chronic conditions. American Journal of Disease in Childhood. 1992;146:901–902
3. Viner R. Effective transition from paediatric to adult services. Hospital Medicine. 2000;61:341–343
4. Blum RW, Garrell D, Hagman CH, et al. Transition from child-centered to adult health systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. The Journal of Adolescent Health. 1993;14:570–576
5. David TJ. Transition from the paediatric clinic to the adult service. Journal of the Royal Society of Medicine. 2001;94(8):373–374
   • MEDLINE
6. Eiser C, Flynn M, Green E, et al. Coming of age with diabetes: patients' views of a clinic for under 24 year olds. Diabetic Medicine. 1993;10:285–289
7. Anderson BJ, Wolpert HA. A developmental perspective on the challenges of diabetes education and care during the young adult period. Patient Education and Counselling. 2003;54:347–352
8. The National Training Initiative in Adolescent Health, http://www.mcs.bc.ca/ntiah.htm
9. Michaud PA, Stronksi S, Fonseca H, et al. The development and pilot-testing of a training curriculum in adolescent medicine and health. The Journal of Adolescent Health. 2004;35(1):51–57
10. Sanci LA, Coffey CM, Veit FC, et al. Evaluation of the effectiveness of an educational intervention for general practitioners in adolescent health care: randomised controlled trial. British Medical Journal. 2000;320(7229):224–230
11. Rosen D. Between two worlds: bridging the cultures of child health and adult medicine. The Journal of Adolescent Health. 1994;17:10–16
12. Florientino L, Datta D, Gentle S, et al. Transition from school to adult tlife for physically disabled young people. Archives of Disease in Childhood. 1998;79:306–311
    • CrossRef
13. Steinkamp G, Ullrich G, Muller C, et al. Transition of adult patients with cystic fibrosis from paediatric to adult care—the patients perspective before and after the start-up of an adult clinic. European Journal of Research. 2001;6:85–92
14. Geenen SJ, Powers LE, Sells W. Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. The Journal of Adolescent Health. 2003;32(3):225–233
15. Flume PA, Anderson DLA, Hardy KK, Gray S. Transition programs in cystic fibrosis centers: perceptions of pediatric and adult program directors. Pediatric Pulmonology. 2001;31:443–450
    • MEDLINE
    • CrossRef
16. Shaw KL, Southwood TR, McDonagh JE, The British Paediatric Rheumatology Group . User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2004;43(6):770–778[Epub 2004 Mar 23]
    • MEDLINE
    • CrossRef
17. Forbes A, While A, Ullman R, et al. A Multi-Method Review to Identify Components of Practice Which May Promote Continuity in the Transition from Child to Adult Care for Young People with Chronic Illness or Disability. London: National Co-ordinating Centre for NHS Service Delivery and Organisation R&D; 2001;
18. McDonagh JE, Foster HE, Hall MA, Chamberlain MA. Audit of rheumatology services for adolescents and young adults in the UK. Rheumatology. 2000;39:596–602
19. Kyngas HA, Kroll T, Duffy ME. Compliance in adolescents with chronic disease. The Journal of Adolescent Health. 2000;26:379–388
20. Cappelli M, Macdonald NE, McGrath PJ. Assessment of readiness to transfer to adult care for adolescent s with cystic fibrosis. Child Health Care. 1989;18:218–224
    • MEDLINE
    • CrossRef
21. McDonagh JE. Growing up and moving on. Transition from pediatric to adult care. Pediatric Transplantation. 2005;9(3):364–372
    • MEDLINE
    • CrossRef
22. Jefferson IG, Swift PGF, Skinner TC, Hook GK. Diabetic services in the UK: third national survey confirms continuing deficiencies. Archives of Disease in Childhood. 2003;88:53–56
    • CrossRef
23. Scal P. Transition for youth with chronic conditions: primary care physicians' approaches. Pediatrics. 2002;110(6):1315–1320
24. Tuffrey C, Pearce A. Transition from paediatric to adult medical services for young people with chronic neurological problems. Journal of Neurology, Neurosurgery, Neuropsychology. 2001;74:1011–1013
25. Zack J, Jacobs CP, Keenan PM, et al. Perspectives of patients with cystic fibrosis on preventative counselling and transition to adult care. Pediatric Transplantation. 2003;36:376–383
26. Kipps S, Bahu T, Ong K, et al. Current methods of transfer of young people with type 1 diabetes to adult services. Diabetic Medicine. 2002;19:649–654
27. Shaw KL, Southwood TR, McDonagh JE. Transitional care for adolescents with juvenile idiopathic arthritis: a Delphi study. Rheumatology. 2004;43(8):1000–1006
28. Sawyer S, Blair S, Bowes G. Chronic illness in adolescents: transfer or transition to adult services?. Journal of Paediatrics and Child Health. 1997;33:88–90
    • MEDLINE
    • CrossRef
29. Myers A, McDonagh JE, Gupta K, et al. More ‘cries from the joints’: assessment of the musculoskeletal system is poorly documented in routine paediatric clerking. Rheumatology. 2004;43:1045–1049
30. Tucker LB, Cabral DA. Transition of the adolescent patient with rheumatic disease: issues to consider. Pediatric Clinical of North America. 2005;52:641–652
31. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians—American Society of Internal Medicine. Consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110(6):1304–6.
32. Royal College of Paediatrics and Child Health. Bridging the gaps: health care for adolescents; June 2003 [http://www.rcpch.ac.uk].
33. Royal College of Nursing. Adolescent transition care: guidance for nursing staff. RCN publication 002313. London: RCN; 2004 [http://www.rcn.org.uk].
34. Department of Health. National Service Framework for Children, Young People and Maternity Services; September 2004 [http://www.dh.gov.uk].
35. Shaw KL, Southwood TR, McDonagh JE. Growing up and moving on in rheumatology: a multicentre cohort of adolescents with juvenile idiopathic arthritis. Rheumatology. 2005;44:806–812
36. Shaw KL, Southwood TR, McDonagh JE, on behalf of the British Paediatric and Adolescent Rheumatology Society . Growing up and moving on in rheumatology: transitional care and quality of life in a multicentre cohort of adolescents with Juvenile Idiopathic Arthritis (JIA). Rheumatology. 2005;44(supplement 1):i92
37. McDonagh JE, Southwood TR, Shaw KL. Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis. J Child Health Care; in press.