Growing up and moving on: Transition from pediatric to adult care
Janet E. McDonagh
Institute of Child Health, Birmingham Children's Hospital, Birmingham, UK
Search for more papers by this authorJanet E. McDonagh
Institute of Child Health, Birmingham Children's Hospital, Birmingham, UK
Search for more papers by this authorAbstract
Abstract: The development of transitional care is one of the major challenges for the twenty-first century as the survival rates and medical outcomes for child and adolescent recipients of transplants continue to improve. Such developments must include both paediatric and adult providers and is likely to require training of professionals in both arenas. Transition is a multidimensional process with transfer to adult care, only one event within that process. The aim of this paper is to present the philosophy of transition and an evidence-based approach to transitional care in terms of the need for it, proposed models of care and the evidence of the benefits of transitional care programmes. Examples of some key clinical aspects of transitional care including communication skills, parenting, self advocacy, vocation will be presented. Adherence issues will be presented in accompanying papers in this journal. Finally, potential barriers to successful transition will be explored.
References
- 1 American Academy of Paediatrics, 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.
- 2 Department of Health. Getting the Right Start: National Service Framework for Children. Standard for Hospital Services. April, 2003 http://www.dh.gov.uk/searchtermchildrensnsf.
- 3 Royal College of Paediatrics and Child Health. Bridging the Gap: Health Care for Adolescents. June 2003 (http://www.rcpch.ac.uk).
- 4 Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM, Society for Adolescent Medicine. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent medicine. J Adolesc Health 2003: 33: 309–311.
- 5 Blum RW, Garell D, Hadgman CH, et al. Transition from child-centred to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993: 14: 570–576.
- 6 Reiss J, Gibson R. Health care transitions: destinations unknown. Pediatrics 2002: 110 (Suppl.): 1307–1314.
- 7 Scal P. Transition for youth with chronic conditions : primary care physicians’ approaches. Pediatrics 2002: 110: 1315–1321.
- 8 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. J Adolesc Health 2003: 32: 225–233.
- 9 Garwick AW, Kohrman C, Wolman C, Blum RW. Families’ recommendations for Improving Services with chronic conditions. Arch Pediatr Adolesce Med 1998: 152: 440–448.
- 10 Joseph Rowntree Foundation. Implementing key worker services: a case study of promoting evidence-based practice. Joseph Rowntree Foundation, York, 1999 (http://www.jrf.org.uk).
- 11 Shaw KL, Southwood TR, McDonagh JE. Transitional care for adolescents with juvenile idiopathic arthritis: results of a Delphi study. Rheumatology 2004: 43: 1000–1006.
- 12 McDonagh JE, Southwood TR, Shaw KL. Unmet adolescent health training needs for rheumatology health professionals. Rheumatology 2004: 43: 737–743.
- 13 Shaw KL, Southwood TR, McDonagh JE. ‘It's not about arthritis, is it? It's about living with it’. Users’ perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology 2004: 43: 770–778.
- 14 Shaw KL, Southwood TR, McDonagh JE. Improving the quality of life for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology 2004: 43: 211–219.
- 15 American Medical Association, Department of Adolescent Health. Guidelines for Adolescent Preventive Services (GAPS): Clinical Evaluation and Management Handbook. Chicago, IL: American Medical Association, 2000 (http://www.ama-assn.org/ama/pub/category/2279.html).
- 16 Carroll G, Massarelli E, Opzoomer A, et al. Adolescents with chronic disease: are they receiving comprehensive health care? J Adolesc Health Care 1983: 17: 32–36.
- 17 Suris JC, Resnick MD, Cassuto N, Blum RW. Sexual behaviour of adolescents with chronic disease and disability. J Adolesce Health 1996: 19: 124–131.
- 18 White PH. Access to health care: health insurance considerations for young adults with special health care needs/disabilities. Pediatrics 2002: 110: 1328–1335.
- 19 Rosen D. Between two worlds: bridging the cultures of child health and adult medicine. J Adol Health 1995: 17: 10–16.
- 20 Landau LI. Cystic fibrosis: transition from pediatric to adult physician's care. Thorax 1995: 50: 1031–1032.
- 21 Durst CL, Horn MV, MacLaughlin EF, Bowmand CM, Starnes VA, Woo MS. Psychosocial responses of adolescent cystic fibrosis patients to lung transplantation. Pediatr Transplant 2001: 5: 27–31.
- 22 Ghosh S, Drummond H, Ferguson A. Neglect of growth and development in the clinical monitoring of children and teenagers with inflammatory bowel disease: review of case records. BMJ 1998: 317: 120–121.
- 23 Nixon GM, Glazner JA, Martin JM, Sawyer SM. Female sexual health in cystic fibrosis. Arch Dis Child 2003: 88: 265–266.
- 24 Sawyer SM, Roberts KV. Sexual and reproductive health in young people with spina bifida. Dev Med Child Neurol 1999: 41: 671–675.
- 25 Reynolds JM, Morton MJ, Garralda ME, Postlethwaite RJ, Goh D. Psychosocial adjustment of adult survivors of a paediatric dialysis and transplant programme. Arch Dis Child 1993: 68: 104–110.
- 26 M Green, JS Palfrey (eds). Bright Futures: Guidelines for Health Supervision of Infants, Children and Adolescents, 2nd edn. Arlington, VA: National Bright Futures Center for Education in Maternal and Child Health, 2000 (http://www.brightfutures.org).
- 27 Klein JD, Allan MJ, Elster AB, et al. Improving adolescents preventive care in community health centers. Pediatrics 2001: 107: 318–327.
- 28 Lemanek KL, Kamps J, Chung NB. Empirically supported treatments in pediatric psychology: regimen adherences. J Pediatr Psychology 2001: 26: 253–275.
- 29 Britto MT, Garrett JM, Dugliss MAL, et al. Risky behaviours in teens with cystic fibrosis or sickle cell disease: a multicentre study. Pediatrics 1998: 101: 250–254.
- 30 Lurie S, Shemesh E, Sheiner PA, et al. Nonadherence in pediatric liver transplant recipients – an assessment if risk factors and natural history. Pediatr Transplant 2000: 4: 200–206.
- 31 Millstein SG, Irwin CE, Adler NE, et al. Health risk behaviours and health concerns among young adolescents. Pediatrics 1992: 89: 422–428.
- 32 Stewart AL, Hays RD, Wells KB, Rogers WH, Spritzer KL, Greenfield S. Long-term functioning and well-being outcomes associated with physical activity and exercise in patients with chronic conditions in the medical outcomes study. J Clin Epidemiol 1994: 47: 719–730.
- 33 Rodino MA, Shane E. Osteoporosis after organ transplantation. Am J Med 1998: 104: 459–469.
- 34 Burker EJ, Carels RA, Thompson LF, Rodgers L, Egan T. Quality of life in patients awaiting lung transplant: cystic fibrosis versus other end stage lung diseases. Pediatr Pulmonol 2000: 30: 453–460.
- 35 Rettig P, Athreya BH. Adolescents with chronic disease: transition to adult health care. Arthritis Care Res 1991: 4: 174–180.
- 36 Salmi J, Huuponen T, Oksa H, Oksala H, Koivula T, Raita P. Metabolic control in adolescent insulin-dependent diabetics referred from pediatric to adult clinic. Ann Clin Res 1986: 4: 174–180.
- 37 Nasr SZ, Campbell C, Howatt W. Transition program from paediatric to adult care for cystic fibrosis patients. J Adolesc Health 1992: 13: 682–685.
- 38 Forbes A, While A, Ullman R, Lewis S, Mathes L, Griffiths P. A Multimethod 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: NCCSDO, 2002 (http://www.sdo.lshtm.ac.uk/publications.htm/).
- 39 Chamberlain MA, Rooney CM. Young adults with arthritis: meeting their transitional needs. Br J Rheumatol 1996: 35: 84–90.
- 40 Scal P, Evans T, Blozis S, Okinow N, Blum R. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. J Adolesc Health 1999: 24: 259–264.
- 41 Boyle MP, Farukhi Z, Nosky ML. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol 2001: 32: 428–436.
- 42 Steinkamp G, Ullrich G, Muller C, Fabel H, von der Hardt H. Transition of adult patients with cystic fibrosis from paediatric to adult care – the patients’ perspective before and after start-up of an adult clinic. Eur J Med Res 2001: 6: 85–92.
- 43 Abdale B, Kuhl K, Tullis DE. Evaluation of patient satisfaction with the transition from a pediatric hospital to an adult centre (abstract). Pediatr Pulmonol 1994: 10 (Suppl.): NR403.
- 44 Kipps S, Bahu T, Ong K, et al. Current methods of transfer of young people with type 1 diabetes to adult services. Diabet Med 2002: 19: 649–654.
- 45 Robertson LP, Hickling P, Davis PJC, Bailey K, Ryder CAJ, McDonagh JE. A comparison of paediatric vs adult rheumatology clinics. (1) The doctor perspective. Arch Dis Child 2003: 88: A39.
- 46 Beresford BA, Sloper P. Chronically ill adolescents’ experiences of communicating with doctors: a qualitative study. J Adolesc Health 2003: 33: 172–179.
- 47 Britto MT, Rosenthal SL, Taylor J, Passo MH. Improving rheumatologists screening for alcohol use and sexual activity. Arch Pediatr Adolesc Med 2000: 154: 478–483.
- 48 Sawyer SM, Tully M-AM, Colin AA. Reproductive and sexual health in males with cystic fibrosis: a case for health professional education and training. J Adolesc Health 2001: 28: 36–40.
- 49 Young B, Dixon-Woods M, Windridge KC, Heney D. Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents. BMJ 2003: 325: 305–309.
- 50 Patterson J, Blum RJ. Risk and resilience among children and youth with disabilities. Arch Pediatr Adolesc Med 1996: 150: 692–698.
- 51 Ehrich JHH, Rizzoni G, Broyer M, et al. Rehabilitation of young adults during renal replacement therapy in Europe 2. Schooling, employment and social situation. Nephrol Dialy Transplant 1992: 7: 573–578.
- 52 Sexson S, Rubenow J. Psychiatric Aspects of Organ Transplantation: Transplants in Children and Adolescents. New York: Oxford University Press, 1992.
- 53 Gold L, Kirkpatrick B, Fricker F, Zitelli B. Psychosocial issues in pediatric organ transplantation: parent's perspective. Pediatrics 1986: 77: 738–744.
- 54 Akinbami LJ, Gandhi H, Cheng TL. Availability of adolescent health services and confidentiality in primary care practices. Pediatrics 2003: 111: 394–401.
- 55 Nash AA, Britto MT, Lovell DJ, Passo MH, Rosenthal SL. Substance use among adolescents with JRA. Arthritis Care Res 1998: 11: 391–396.
- 56 Robertson LP, Shaw KL, Southwood TR, McDonagh JE. An audit of patients with juvenile idiopathic arthritis recently transferred from paediatric to adult rheumatology clinics. Rheumatology 2003: 42: 51.
- 57 McPherson A. Primary health care and adolescence. In: A MacFarlane, ed. Adolescent Medicine. London: Royal College of Physicians, 1996: pp. 33–41.
- 58 Cheng TL, Savageau JA, Sattler AL, DeWitt TG. Confidentiality in health care. A survey of knowledge, perceptions and attitudes among high school students. JAMA 1993: 269: 1404–1407.
- 59 Zack J, Jacobs CP, Keenan PM, et al. Perspectives of patients with cystic fibrosis on preventive counselling and transition to adult care. Pediatr Pulmonol 2003: 36: 376–383.
- 60 Reid GJ, Irvine MJ, McCrindle BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex ongenital heart defects. Pediatrics 2004: 113e: e197–e205.
- 61 Morton MJ, Reynolds JM, Garralda ME, Postlethwaite RJ, Goh D. Psychiatric adjustment in end-stage renal disease. A follow-up study of former paediatric patients. J Psychosom Res 1994: 38: 293–303.
- 62 Eiser C, Town C. Teachers’ concerns about chronically sick children: implications for paediatricians. Dec Med Child Neurol 1987: 29: 56.
- 63 White PH, Gussek DG, Fisher B, et al. Career maturity in adolescents with chronic illness. J Adolesc Health Care 1990: 11: 372.
- 64 Phillips S, Sandston KL. Parental attitudes toward work. Youth Soc 1990: 22: 160.
- 65 Bateman BJ, Finlay F. Long term medical conditions: career prospects. Arch Dis Child 2002: 87: 291–292.
- 66 Flume PA, Anderson DL, Hardy KK, Gray S. Transition programs in cystic fibrosis centers: perceptions of pediatric and adult program directors. Pediatr Pulmonol 2001: 31: 443–450.
- 67 Fox A. Physicians as barriers to successful transitional care. Int J Adolesc Health 2002: 14: 3–7.
- 68 Westwood A, Henley L, Willcox P. Transition from paediatric to adult care for persons with cystic fibrosis: patient and parent perspectives. J Paediatr Child Health 1999: 35: 442–445.