Erwachsene mit juveniler idiopathischer Arthritis - Krankheitsfolgen und Versorgungssituation

 

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Zusammenfassung

Die juvenile idiopathische Arthritis (JIA) umfasst eine heterogene Erkrankungsgruppe mit variabler Langzeitprognose. Generell hat jeder zweite Patient auch im jungen Erwachsenenalter noch rheumatische Beschwerden oder leidet an Folgen der Erkrankung. Krankheitsfolgen auf körperlicher Ebene beinhalten neben Gelenkveränderungen mit Bewegungseinschränkungen, Fehlstellungen und sekundärer Degeneration auch Wachstumsstörungen, Osteoporose sowie weitere extraartikuläre Organschäden z. B. an den Augen. Die Veränderungen auf körperlicher Ebene resultieren bei weniger als der Hälfte der Patienten in Funktionsminderungen, wobei etwa 10 % auf Hilfe im Alltag angewiesen sind. Jeder fünfte Erwachsene mit JIA ist infolgedessen bei der Teilhabe am gesellschaftlichen Leben eingeschränkt, was sich u. a. in krankheitsbedingter Arbeits- und Erwerbsunfähigkeit äußert. Trotz oft beträchtlicher Krankheitslast befinden sich weniger als die Hälfte der Erwachsenen mit noch aktiver rheumatischer Erkrankung in spezialisierter Betreuung, mindestens ein Drittel der Patienten weisen Defizite in der medikamentösen und nicht-medikamentösen Versorgung auf. Diese Versorgungsdefizite sollten Anlass zur Überprüfung bestehender Betreuungsangebote für junge Erwachsene mit im Kindesalter erworbener Arthritis geben.

Abstract

Approximately 50 % of patients with juvenile idiopathic arthritis (JIA) continue to have active disease in early adulthood. JIA-related morbidity in adulthood results from persisting active disease, as well as from sequelae on bodily level, such as joint damage, growth abnormalities, osteoporosis and poor visual acuity. The impairments on bodily level lead to activity limitations in less than half of all patients, with one in ten patients being in need of help to cope with their daily life. Consequently, one in five adults with JIA are limited in their participation in society, reflected among others in JIA-related work disability. Despite the worth-mentioning burden of illness, less than half of those still having active disease are in specialised care, with at least one-third being inadequately supplied with medical and non-medical treatment. These deficits in health care provision should lead to an evaluation of existing health care services for young adults with juvenile idiopathic arthritis.

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Dr. Kirsten Minden

Deutsches Rheumaforschungszentrum Berlin

Schumannstraße 21/22 · 10117 Berlin ·

Phone: 030/28460632

Email: minden@drfz.de