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Lupus in Deutschland: Querschnittsanalyse innerhalb der Lupus erythematodes Selbsthilfegemeinschaft (LULA)

Lupus in Germany: analysis within the German lupus self-help organization (LULA)

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Zusammenfassung

Die verbesserte Prognose bei systemischem Lupus erythematodes (LE) hat zur Veränderung der Perspektive einer Erkrankung mit vormals hoher Früh-Mortalität zu einem vorrangig chronischen Krankheitsbild mit entsprechenden Langzeitauswirkungen geführt. Trotz einer auf 20–50/100 000 geschätzten Prävalenz existieren nur wenige Daten zu der aktuellen Situation von Lupus-Betroffenen in Deutschland. Seit 2001 dokumentiert die über 10 Jahre geplante Lupus-Langzeitbeobachtung (LULA) innerhalb der Lupus erythematodes Selbsthilfegemeinschaft erstmals vorrangig auf Patientenebene den Ist-Zustand und soll in der weiteren Entwicklung den Langzeitverlauf einer zahlenmäßig großen Gruppe von Lupus- Betroffenen festhalten. Die Dokumentation erfolgt anhand eines an die Kerndokumentation adaptierten jährlich aktualisierten Fragebogens.

2001 nahmen 1033 Mitglieder teil, davon 92,2% Frauen (mittleres Alter 45,8 Jahre) mit einer mittleren Erkrankungsdauer von 9,9 Jahren. 37,6% sind berufstätig, 24,5% erhalten eine Erwerbsunfähigkeitsrente. 9,8% bezeichnen ihren aktuellen Gesundheitszustand als „sehr gut“ oder „gut“, 40,1% als „zufriedenstellend“ und 50,2% als „weniger gut“ oder „schlecht“. Neben Steroiden (67,9%) erhalten die meisten eine Therapie mit Antimalariamitteln (Hydroxy-[Chloroquin]: 35,2%) bzw. Azathioprin (21,9%). Die häufigsten Begleiterkrankungen sind arterielle Hypertonie (33%), narbige Hautveränderungen (24,4%), degenerative Gelenkveränderungen (25,2%), Osteoporose (24%), psychische Erkrankungen/Depressionen (22,9%) und chronische Nierenerkrankungen (22%). Thrombosen/Embolien haben 18,5%, einen Herzinfarkt 2,3% bzw. zerebralen Insult 4,8% erlitten. Hauptansprechpartner in der Versorgung ist bei 63,6% ein Rheumatologe. Im Vergleich mit insbesondere den Daten aus der Kerndokumentation erscheinen die ausschließlich in Selbstdokumentation erhobenen Angaben plausibel und die Teilnehmer in Bezug auf Krankheitsschwere und Therapiemuster mit anderen LEBetroffenen vergleichbar. Die Teilnehmer stellen daher eine repräsentative Gruppe von LE-Betroffenen in Deutschland dar. Die weitere Erfassung, insbesondere im Langzeitverlauf, kann somit zu neuen Erkenntnissen hinsichtlich der Krankheitslast und Versorgungsstrategien beitragen.

Summary

During the last few decades, the prognosis for patients with systemic lupus erythematosus (LE) has changed from high early mortality to a more chronic longterm course. Although the prevalence of LE has been estimated at 20–50/100,000, data concerning the situation of LE patients in Germany are sparse. Since 2001, a documentation within the German Lupus Self-Help Organisation scheduled for a period of 10 years (LULA) has been recording at the patient level the actual status and the long-term course of a large group of LE patients. A questionnaire adapted from the German rheumatological database is updated once a year and sent to all members.

In 2001, 1033 members participated in the documentation. Of these, 92.2% were women (mean age 45.8 years) with a mean disease duration of 9.9 years. 37.6% were employed, and 24.5% were on early retirement. 50.2% rated their overall health status as “not so good” or “poor”.

Most were receiving treatment with [hydroxy-]chloroquine (35.2%) or azathioprine (21.9%), while 67.9% were receiving corticosteroids. The most frequent comorbidities reported were hypertension (33%), scarring skin disease (24.4%), osteoarthritis (25.2%), osteoporosis (24%), psychiatric disorders/depression (22.9%) and chronic renal disease (22%). Thromboembolic events were reported in 18.5%, myocardial infarction in 2.3% and stroke in 4.8% of cases. Concerning their main contact person for health care, 63.6% specified the rheumatologist. In comparison with other cohort studies and in particular with the German rheumatological database, the data provided exclusively by patients are feasible. Concerning the severity of their disease, their treatment and their global assessment of health status, LULA participants are comparable with other LE patients and can be seen as representative of LE patients in Germany. Further assessment especially of long-term data are needed to obtain additional insights into the burden of the disease and the need for special medical care.

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Authors and Affiliations

  1. Rheumazentrum Düsseldorf, Heinrich-Heine-Universität, Moorenstraße 5, 40225, Düsseldorf, Germany

    R. Fischer-Betz,  E. Wessel,  J. Richter &  M. Schneider

  2. Lupus Erythematodes Selbsthilfegemeinschaft e. V., Döppersberg 20, 42103, Wuppertal

    B. Winkler-Rohlfing

  3. Universitätsrechenzentrum, Heinrich-Heine-Universität, Universitätsstr. 1, 40225, Düsseldorf, Germany

    R. Willers

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  1. R. Fischer-Betz
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Correspondence to R. Fischer-Betz.

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Fischer-Betz, R., Wessel, E., Richter, J. et al. Lupus in Deutschland: Querschnittsanalyse innerhalb der Lupus erythematodes Selbsthilfegemeinschaft (LULA). Z. Rheumatol. 64, 111–122 (2005). https://doi.org/10.1007/s00393-005-0644-5

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