Zusammenfassung
Im Kindesalter beginnende chronische rheumatische Erkrankungen bleiben oft bis in das Erwachsenenalter aktiv und sind mit Einschränkungen auf körperlicher, funktioneller und sozialer Ebene verbunden. Die medizinische und psychosoziale Betreuung der Patienten muss also über das Jugendalter hinaus fortgeführt werden, was einen Wechsel von der kind-zentrierten in die erwachsenen-orientierte Gesundheitsbetreuung erforderlich macht. Jugendliche und junge Erwachsene geplant, individuell ausgerichtet und gut koordiniert in die erwachsenen-medizinische Betreuung zu überführen (=Transition), ist relevant für deren zukünftige Partizipation in der Gesellschaft und gehört heute zu einer guten klinischen Praxis. Im Rahmen der medizinischen Begleitung rheumakranker Jugendlicher beim Übergang in das Erwachsenenalter müssen neben krankheitsspezifischen Aspekten auch die entwicklungsbedingten Besonderheiten dieses Lebensabschnittes berücksichtigt werden. Die derzeitigen Betreuungsangebote für rheumakranke Jugendliche und junge Erwachsene in Deutschland sind unzureichend. Pädiatrische und internistische Rheumatologen sollten in enger Zusammenarbeit spezielle Betreuungskonzepte für diese Patientengruppe etablieren.
Summary
Chronic inflammatory rheumatic diseases with onset in childhood often persist into adulthood and result in a considerable number of patients in impairments of body functions and structures, activities at the individual level and participation in society. Continuation of health care beyond adolescence is, therefore, necessary. Its provision should be of high quality, coordinated, uninterrupted, patient-centred and developmentally appropriate to ensure smooth transitions between children’s and adult services and positive outcomes of transition for the young people themselves. Existing research is very persuasive on the need to improve transitions for young people with rheumatic diseases. To achieve effective transition, not only disease specific, but also aspects of growth and development have to be taken into account. Paediatric and adult rheumatologists should establish close cooperations and implement specific transition programs to meet the special health care needs of these patients.
References
Adam V, St.-Pierre Y, Fautrel B, Clarke AE, Duffy CM, Penrod JR (2005) What is the impact of adolescent arthritis and rheumatism? Evidence from a national sample of Canadians. J Rheumatol 32:354–361
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
Ansell BM, Chamberlain MA (1998) Children with chronic arthritis: the management of transition to adulthood. Baillieres Clin Rheumatol 12:363–373
Baines P, Chamberlain MA (1994) The physically disabled adolescent: Service provision in the community. Matern Child Health, pp 11–19
Bent N, Tennant A, Swift T, Posnett J, Scuffham P, Chamberlain MA (2002) Team approach versus ad hoc health service for young people with physical disabilities: a retrospective cohort study. Lancet 360:1280–1286
Blum RW, Garell D, Hadgman CH (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 Adolescent Health 14:570–576
Blum RW (1995) Conference proceedings: Moving on: transition from pediatric to adult health care. J Adolesc Health 17:3–36
Department of Health (2003) Getting the right start: national service framework for children. Standard for Hospital Services. (www.doh.gov.uk/nsf/)
Deutsches Institut für Medizinische Dokumentation und Information (2005) ICD-10-GM Systematisches Verzeichnis. http://www.dimdi.de/de/klassi/diagnosen/icd10/. Köln
Dreher M, Dreher E (1997) Entwicklungsaufgaben im Jugendalter—Urteilstendenzen im Wandel eines Jahrzehnts. In: Glück J (Hrsg) 13. Tagung Entwicklungspsychologie, Kurzfassungen. Universität Wien, Wien, S 37
Flato B, Lien G, Smerdel A, Vinje O, Dale K, Johnston V, Sorskaar D, Moum T, Ploski R, Forre O (2003) Prognostic factors in juvenile rheumatoid arthritis: a case-control study revealing early predictors and outcome after 14.9 years. J Rheumatol 30:386–393
Foster HE, Marshall N, Myers A, Dunkley P, Griffiths ID (2003) Outcome in adults with juvenile idiopathic arthritis: a quality of life study. Arthritis Rheum 48:767–775
French AR, Mason T, Nelson AM, Crowson CS, O’Fallon WM, Khosla S, Gabriel SE (2002) Osteopenia in adults with a history of juvenile rheumatoid arthritis. A population based study. J Rheumatol 29:1065–1070
Greenen S, Powers L, Sells W (2003) Understanding the role of health care providers during the transition of adolescents with disabilities and special health care needs. J Adolesc Health 32:225–233
Kommission Regionale Rheumatologische Versorgung (1994) Memorandum der Deutschen Gesellschaft für Rheumatologie. Grundzüge einer wohnortnahen kontinuierlichen und kooperativen Versorgung von chronisch Rheumakranken in der Bundesrepublik Deutschland. Z Rheumatol 53:113–134
McDonagh JE, Kelly DA (2003) Transitioning care of the pediatric recipient to adult caregivers. Pediatr Clin N Am 50:1561–1583
McDonagh JE, Southwood TR, Shaw KL (2004) British Paediatric Rheumatology Group. Unmet education and training needs of rheumatology health professionals in adolescent health and transitional care. Rheumatology (Oxford) 43:737–743
McDonagh JE (2000) The adolescent challenge. Nephrol Dial Transplant 15:1761–1765
Minden K, Niewerth M, Listing J, Biedermann T, Bollow M, Schontube M, Zink A (2002) Long-term outcome in patients with juvenile idiopathic arthritis. Arthritis Rheum 46:2392–2401
Minden, K, Niewerth, M, Listing J, Biedermann T, Schöntube M, Zink A (2004) Burden and cost of illness in adult patients with juvenile idiopathic arthritis. Ann Rheum Dis 63:836–842
Nasr SZ, Campbell C, Howatt W (1992) Transition program from paediatric to adult care for cystic fibrosis patients. J Adolesc Health 13:682–685
Niewerth M, Minden K, Möbius D, Ganser G, Küster R-M, Zink A, AGKJR (2004) Die juvenile idiopathische Arthritis beim Übergang ins Erwachsenenalter. Z Rheumatol 63:267
Packham JC, Hall MA (2002) Long-term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome. Rheumatology (Oxford) 41:1428–1435
Rettig P, Athreya BH (1991) Adolescents with chronic disease: transition to adult health care. Arthritis Care Res 4:174–180
Salmi J, Huuponen T, Oksa H, Oksala H, Koivula T, Raita P (1986) Metabolic control in adolescent insulin-dependent diabetics referred from pediatric to adult clinic. Ann Clin Res 4:174–180
Sawyer SM, Bowes G (1999) Adolescence on the health agenda. Lancet 354:31–34
Sawyer SM (1998) The process of transition to adult health care services. In: Werther G, Court J (eds) Diabetes and Adolescent. Blackwell, Melbourne
Schidlow D, Fiel S (1990) Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am 74:1113–1120
Shaw KL, Southwood TR, McDonagh JE (2004) British Paediatric Rheumatology Group. Developing a programme of transitional care for adolescents with juvenile idiopathic arthritis: results of a postal survey. Rheumatology (Oxford) 43:211–219
Shaw KL, Southwood TR, McDonagh JE (2004) British Paediatric Rheumatology Group. Transitional care for adolescents with juvenile idiopathic arthritis: a Delphi study. Rheumatology (Oxford) 43:1000–1006
Thomas E, Symmons DP, Brewster DH, Black RJ, Macfarlane GJ (2003) National study of cause-specific mortality in rheumatoid arthritis, juvenile chronic arthritis, and other rheumatic conditions: a 20 year followup study. J Rheumatol 30:958–965
Viner R (2000) Effective transition from paediatric to adult services. Hospital Medicine 61:341-343
Viner R (1999) Transition from paediatric to adult care. Bridging the gap or passing the buck? Arch Dis Child 81:271–275
Zak M, Fledelius H, Pedersen FK (2003) Ocular complications and visual outcome in juvenile chronic arthritis: a 25-year follow-up study. Acta Ophthalmol Scand 81:211–215
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Minden, K., Niewerth, M., Zink, A. et al. Transition-Clinic—. Z. Rheumatol. 64, 327–333 (2005). https://doi.org/10.1007/s00393-005-0746-0
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DOI: https://doi.org/10.1007/s00393-005-0746-0