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Aktuelle Rheumatologie 2015; 40(04): 268-274
DOI: 10.1055/s-0035-1545322
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© Georg Thieme Verlag KG Stuttgart · New York

Transition – ein erfolgreiches Konzept in der Behandlung der JIA

Transition – A Successful Concept of JIA Treatment
K. Minden
1   Charité-Universitätsmedizin Berlin, CharitèCentrum17, Berlin
2   Deutsches Rheuma-Forschungszentrum, Programmbereich Epidemiologie, Berlin
,
M. Niewerth
2   Deutsches Rheuma-Forschungszentrum, Programmbereich Epidemiologie, Berlin
› Author Affiliations
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Publication History

Publication Date:
22 July 2015 (online)

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Zusammenfassung

Die häufigste entzündlich-rheumatische Erkrankung des Kindes- und Jugendalters, die juvenile idiopathische Arthritis (JIA), bleibt oft bis ins Erwachsenenalter aktiv bzw. medikamentös behandlungsbedürftig. Bei etwa der Hälfte der Patienten besteht deshalb ein fachspezifischer Betreuungsbedarf über das Jugendalter hinaus. Die meisten der weiter betreuungsbedürftigen Patienten haben eine polyartikuläre JIA oder Spondylarthritis und weisen mit einer asymmetrischen Oligoarthritis, kaum erhöhten Entzündungsparametern und einer asymptomatischen Augenentzündung für chronische Arthritiden im Erwachsenenalter eher untypische artikuläre und extraartikuläre Manifestationen auf. Für die Betroffenen stellt der Übergang in das Erwachsenenalter oft einen schwierigen Prozess dar. Neben der Absolvierung der normalen Entwicklungsaufgaben haben die jungen Rheumatiker nach Verlassen der pädiatrischen Obhut zeitnah einen internistischen Rheumatologen aufzusuchen. Letzteres gelingt in etwa einem Drittel der Fälle nicht. Von denjenigen, die die internistische Rheumatologie erreichen, kommt ein beträchtlicher Teil mit der neuen Betreuungssituation nicht zurecht und ist dementsprechend unzufrieden. Mit speziellen Maßnahmen und Programmen versucht man deshalb, die Betroffenen entsprechend ihrer individuellen medizinischen, psychosozialen und Bildungs-/beruflichen Bedürfnisse zu unterstützen und eine kontinuierliche medizinische Versorgung zu organisieren. Die hierfür erforderlichen und über die Regelversorgung hinausgehenden Versorgungsleistungen werden bisher allerdings nicht flächendeckend angeboten, wenngleich es ausreichend Evidenz für deren Notwendigkeit gibt. Strukturelle und psychosoziale Barrieren stehen dem entgegen. Transition erfordert eine Umorganisation des Praxisalltags, die u. a. ausreichend lange Konsultationszeiten, eine altersangepasste Gesprächsführung, das Adressieren altersspezifischer Themen und eine gute Kooperation zwischen Pädiater und Internist einschließt. Bedarf besteht, die Wirksamkeit von Transitionsmaßnahmen zu belegen. Damit könnte eine Voraussetzung für die Anerkennung von Transition als Leistung der Regelversorgung geschaffen werden.

Abstract

The most common chronic inflammatory rheumatic disease of childhood and adolescence, juvenile idiopathic arthritis (JIA), often persists into adulthood. About half of the patients are in need of rheumatological care beyond adolescence. Most of these patients have polyarticular JIA or spondylarthritis and present with rather unusual articular and extra-articular manifestations, such as asymmetric oligoarthritis, hardly elevated inflammatory laboratory parameters and asymptomatic uveitis, to adult rheumatologists. For young people with JIA, the transition to adulthood is a challenging process. The patients have to complete the normal developmental tasks, but have also to manage the transfer to adult care. The latter works in only 2 of 3 cases. Of those young people who reach adult rheumatology care, a significant proportion is not able to cope with the new setting of care and is accordingly unsatisfied. Therefore, specific measures and programmes have been established to support the young people in the transition process according to their individual medical, psychosocial and educational/vocational needs and to organise a continuous medical care. However, the implementation of such youth-friendly services including transitional care has been frustratingly slow. Many structural and psychosocial barriers do exist and prevent the widespread implementation of health transition supports. Transition is resource consuming. It requires a reorganisation of workstreams to accommodate a clear, well-documented transitional pathway, including among other things, sufficiently long consultation times, an age-appropriate communication, addressing of age-specific topics and a close cooperation between paediatric and adult rheumatologists. There is a need to evaluate the effectiveness of such measures. That could be a precondition to recognise transition services as part of regular health care.

Schlüsselwörter

Transition - juvenile idiopathische Arthritis - Outcome - Schnittstelle pädiatrische/internistische Rheumatologie

Key words

transition - juvenile idiopathic arthritis - outcome - paediatric and adult rheumatology interface
 

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