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Rheumatische Erkrankungen im Kindes- und Jugendalter: Wichtigkeit einer frühzeitigen multiprofessionellen Versorgung

Rheumatic diseases in childhood and adolescence: importance of early multi-professional care

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Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz Aims and scope

Zusammenfassung

Die juvenile idiopathische Arthritis (JIA) ist die häufigste chronisch-entzündliche rheumatische Erkrankung im Kindesalter. Sowohl die mit Schmerzen und Bewegungseinschränkungen einhergehende Erkrankung als auch die meist komplexe, langfristige Therapie sind mit Belastungen für die Betroffenen bis ins Erwachsenenalter hinein verbunden. Beeinträchtigungen können sich auf viele Lebensbereiche auswirken. Eine ganzheitliche Betreuung mit Berücksichtigung der Präferenzen und geäußerten Bedarfe der Patienten und ihrer Familien ist entscheidend, um die angestrebten Therapieziele einer Remission und bestmöglichen Lebensqualität zu erreichen. Da die JIA in einer sehr frühen Lebensphase beginnt, sind krankheits- und therapiebedingte Langzeitfolgen von erheblicher Bedeutung.

Die Zulassung neuer, spezifisch in den Entzündungsprozess eingreifender Substanzen hat die Behandlung der JIA in den letzten Jahren grundlegend verändert. Vor allem eine frühe effektive Therapie trägt entscheidend zu einer verbesserten Prognose der JIA-Patienten bei. Mittlerweile gehen JIA-Patienten mit guter Alltagsfunktion und Lebensqualität sowie weniger Folgeschäden und Begleiterkrankungen ins Erwachsenenalter, wenngleich nur ca. die Hälfte eine stabile therapiefreie Remission erreicht. Um den notwendigen Wechsel in die Erwachsenenmedizin zu unterstützen, wurden Transitionsprogramme entwickelt, die die jungen Rheumatiker auf die neue Betreuungsform vorbereiten und Versorgungslücken sowie ungünstige Outcomes verhindern sollen. Nicht zuletzt ist die Erfassung psychischer Faktoren wichtig, um im Bedarfsfall die chronisch Kranken beim Umgang mit ihrer Krankheit und den daraus resultierenden Herausforderungen zu unterstützen.

Abstract

Juvenile idiopathic arthritis (JIA) is the most common chronic inflammatory rheumatic disease in children. Both the disease, which is accompanied by pain and movement restrictions, and its usually complex, long-term therapy, are associated with burdens for those affected until adulthood. Impairments can affect many areas of life. Holistic care that considers the preferences and expressed needs of patients and their families is crucial in order to achieve the desired therapeutic goals of remission and the best possible quality of life. Since JIA begins in a very early phase of life, long-term consequences due to illness and therapy are of considerable importance.

The approval of new substances that specifically intervene in the inflammatory process has fundamentally changed the treatment of JIA in recent years. Above all, early effective therapy makes a decisive contribution to an improved prognosis of JIA patients. Meanwhile, JIA patients enter adulthood with good everyday function and quality of life as well as less secondary damage and concomitant diseases, although only about half achieve stable therapy-free remission. In order to support the necessary transition into adult medicine, transition programmes have been developed to prepare young rheumatics for the new form of care and to prevent gaps in care and unfavourable outcomes. Last but not least, the recording of psychological factors is important in order to support the chronically ill in dealing with their illness and the resulting challenges, if necessary.

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Danksagung

Wir danken allen Teilnehmern der Beobachtungsstudien ICON, Kinder-KD und JuMBO, insbesondere den Patienten mit JIA und ihren Eltern und dem ICON Consortium. Die Kinder-KD wurde von der Deutschen Kinderrheumastiftung, den Firmen Abbvie, Pfizer, Chugai, Novartis und gsk unterstützt. ICON wird vom Bundesministerium für Bildung und Forschung (BMBF, FKZ 01 ER 1504A) gefördert. JuMBO wurde mit einem unconditional grant von den Firmen Abbvie, Pfizer und Roche unterstützt.

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  1. Programmbereich Epidemiologie, Arbeitsgruppe Kinderrheumatologie, Deutsches Rheuma-Forschungszentrum Berlin, Berlin, Deutschland

    Claudia Sengler, Martina Niewerth & Kirsten Minden

  2. Deutsches Rheuma-Forschungszentrum Berlin, Charité Platz 1, 10117, Berlin, Deutschland

    Claudia Sengler

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Correspondence to Claudia Sengler.

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Interessenkonflikt

C. Sengler und M. Niewerth K. Minden geben an, dass kein Interessenkonflikt besteht. K. Minden erhielt Forschungsunterstützung von der Deutschen Rheumastiftung und Honorare von den Unternehmen Biermann, gsk, Roche, Sanofi.

Für diesen Beitrag wurden von den Autoren keine Studien an Menschen oder Tieren durchgeführt. Für die aufgeführten Studien gelten die jeweils dort angegebenen ethischen Richtlinien.

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Aus Gründen der besseren Lesbarkeit wird auf die gleichzeitige Verwendung männlicher und weiblicher Sprachformen verzichtet. Sämtliche Personenbezeichnungen gelten für beide Geschlechter.

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Sengler, C., Niewerth, M. & Minden, K. Rheumatische Erkrankungen im Kindes- und Jugendalter: Wichtigkeit einer frühzeitigen multiprofessionellen Versorgung. Bundesgesundheitsbl 63, 846–855 (2020). https://doi.org/10.1007/s00103-020-03173-0

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