Zeitschrift für Rheumatologie

, Volume 64, Issue 2, pp 111–122 | Cite as

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

  • R. Fischer-Betz
  • E. Wessel
  • J. Richter
  • B. Winkler-Rohlfing
  • R. Willers
  • M. Schneider
ORIGINALARBEIT

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.

Schlüsselwörter

Systemischer Lupus erythematodes Prognose Kohortenstudie Krankheitsschwere Selbstdokumentation 

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

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.

Key words

Systemic lupus erythematosus prognosis cohort studies severity of illness self documentation 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Abu-Shakra M, Urowitz MB, Gladman DD, Gough J (1995) Mortality studies in systemic lupus erythematosus. Results from a single center. I. Causes of death. J Rheumatol 22(7):1259–1264PubMedGoogle Scholar
  2. 2.
    Alarcon GS, McGwin G Jr, Petri M, Reveille JD, Ramsey-Goldman R, Kimberley RP for the PROFILE Study group (2002) Baseline characteristics of a multiethnic lupus cohort: PROFILE. Lupus 11:95–101Google Scholar
  3. 3.
    Boersma E, Keil U, De Bacquer D et al (2003) Blood pressure is insufficiently controlled in European patients with established coronary heart disease. J Hypertension 21:1831–1840Google Scholar
  4. 4.
    Cervera R, Khamashta M, Font J, Sebastiani GD, Gil A, Lavilla P et al (1993) Systemic Lupus Erythematosus: Clinical and Immunologic Patterns of Disease Expression in a Cohort of 1,000 Patients. Medicine 72 (2):113–124PubMedGoogle Scholar
  5. 5.
    Colditz GA, Martin P, Stampfer MJ, Willett WC, Sampson L, Rosner B, Hennekens CH, Speizer FE (1986) Validation of questionnaire information on risk factors and disease outcomes in a prospective cohort study of women. Am J Epidemiol 123(5):894–900PubMedGoogle Scholar
  6. 6.
    Friedman AW, Tewi MB, Ahn C, McGwin G Jr, Fessler BJ, Bastian HM, Baethge BA, Reveille JD, Alarcon GS; LUMINA Study Group (2003) Systemic lupus erythematosus in three ethnic groups: XV. Prevalence and correlates of fibromyalgia. Lupus 12(4):274–279Google Scholar
  7. 7.
    Gladman D, Ginzler E, Goldsmith C et al (1992) Systemic lupus international collaborative clinics: development of a damage index in systemic lupus erythematosus. J Rheumatol 19:1820–1821Google Scholar
  8. 8.
    Gladman DD, Urowitz MB, Rahman P, Ibanez D, Tam LS (2003) Accrual of organ damage over time in patients with systemic lupus erythematosus. J Rheumatol 30(9):1955–1959Google Scholar
  9. 9.
    Katz JN, Chang LC, Sangha O, Fossel AH, Bates DW (1996) Can comorbidity be measured by questionnaire rather than medical record review? Med Care 34(1):73–84Google Scholar
  10. 10.
    Linet MS, Harlow SD, McLaughlin JK, McCaffrey LD (1989) A comparison of interview data and medical records for previous medical conditions and surgery. J Clin Epidemiol 42(12):1207–1213Google Scholar
  11. 11.
    Lopez P, Mozo L, Gutierrez C, Suarez A (2003) Epidemiology of systemic lupus erythematosus in a northern Spanish population: gender and ageinfluence on immunological features. Lupus 12(11):860–865Google Scholar
  12. 12.
    Manger K, Manger B, Repp R, Geisselbrecht M, Geiger A, Pfahlberg A, Harrer T, Kalden JR (2002) Definition of risk factors for death, end stage renal disease, and thromboembolicevents in a monocentric cohort of 338 patients with systemic lupus erythematosus. Ann Rheum Dis 61(12):1065–1070Google Scholar
  13. 13.
    Mechanic D (1980) The experience and reporting of common physical complaints. J Health Soc Behav 21(2):146–155Google Scholar
  14. 14.
    Middleton GD, McFarlin JE, Lipsky PE (1994) The prevalence and clinical impact of fibromyalgia in systemic lupus erythematosus. Arthritis Rheum 37(8):1181–1188Google Scholar
  15. 15.
    Nived O, Jonsen A, Bengtsson AA, Bengtsson C, Sturfelt G (2002) High predictive value of the Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index for survival in systemic lupus erythematosus. J Rheumatol 29(7):1398–1400Google Scholar
  16. 16.
    Partridge AJ, Karlson EW, Daltroy LH, Lew RA, Wright EA, Fossel AH, Straaton KV, Stern SH, Kavanaugh AF, Roberts WN, Liang MH (1997) Risk factors for early work disability in systemic lupus erythematosus: results from a multicenter study. Arthritis Rheum 40(12):2199–2206Google Scholar
  17. 17.
    Reveille JD, Moulds JM, Ahn C, Friedman AW, Baethge B, Roseman J, Straaton KV, Alarcon GS (1998) Systemic lupus erythematosus in three ethnic groups: I. The effects of HLA class II, C4, and CR1 alleles, socioeconomic factors, and ethnicity at disease onset. LUMINA Study Group. Lupus in minority populations, nature versus nurture. Arthritis Rheum 41(7):1161–1172Google Scholar
  18. 18.
    Rivest C, Lew RA, Welsing PM, Sangha O, Wright EA, Roberts WN, Liang MH, Karlson EW (2000) Association between clinical factors, socioeconomic status, and organ damage in recent onset systemic lupus erythematosus. J Rheumatol 27(3):680–684PubMedGoogle Scholar
  19. 19.
    Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN (2003) The Self-Administered Comorbidity Questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Rheum 15; 49(2):156–163Google Scholar
  20. 20.
    Stahl-Hellengren C, Jonsen A, Nived O, Sturfelt G (2000) Incidence studies of systemic lupus erythematosus in Southern Sweden: increasing age, decreasing frequency of renal manifestations and good prognosis. J Rheumatol 27(3):685–691Google Scholar
  21. 21.
    Statistisches Bundesamt (2001) Bevölkerung und Erwerbstätigkeit. Ergebnisse des Mikrozensus. Wiesbaden, 2002Google Scholar
  22. 22.
    Swaak AJ, van den Brink HG, Smeenk RJ, Manger K, Kalden JR, Tosi S, Marchesoni A, Domljan Z, Rozman B, Logar D, Pokorny G, Kovacs L, Kovacs A, Vlachoyiannopoulos PG, Moutsopoulos HM, Chwalinska-Sadowska H, Dratwianka B, Kiss E, Cikes N, Branimir A, Schneider M, Fischer R, Bombardieri S, Mosca M, Smolen JS et al (1999) Systemic lupus erythematosus: clinical features in patients with a disease duration of over 10 years, first evaluation. Rheumatology (Oxford) 38(10):953–958Google Scholar
  23. 23.
    Takada K, Illei GG, Boumpas DT (2001) Cyclophosphamide for the treatment of systemic lupus erythematosus. Lupus10(3):154–161Google Scholar
  24. 24.
    Urowitz MB, Gladman DD (1999) Evolving spectrum of mortality and morbidity in SLE. Lupus 8(4):253–255Google Scholar
  25. 25.
    Ward MM, Pyun E, Studenski S (1995) Long-term survival in systemic lupus erythematosus. Patient characteristics associated with poorer outcomes. Arthritis Rheum 38:274–283Google Scholar
  26. 26.
    Wolf-Maier K, Cooper RS, Banegas JR et al (2003) Hypertension prevalence and blood pressure levels in 6 European countries, Canada, and the United States. JAMA 289:2363–2369CrossRefPubMedGoogle Scholar
  27. 27.
    Zink A (1995) Epidemiologie der rheumatologischen Versorgung in Deutschland. Z Rheumatol 54:184–191Google Scholar
  28. 28.
    Zink A, Fischer-Betz R, Thiele K, Listing J, Huscher D, Gromnica-Ihle E, Specker C, Schneider M for the German Collaborative Arthritis Centres (2004) Health care and burden of illness in SLE compared to RA. Results from the national database of the German Collaborative Arthritis Centres (Lupus, in press)Google Scholar

Copyright information

© Steinkopff Verlag 2005

Authors and Affiliations

  • R. Fischer-Betz
    • 1
  • E. Wessel
    • 1
  • J. Richter
    • 1
  • B. Winkler-Rohlfing
    • 2
  • R. Willers
    • 3
  • M. Schneider
    • 1
  1. 1.Rheumazentrum DüsseldorfHeinrich-Heine-UniversitätDüsseldorfGermany
  2. 2.Lupus Erythematodes Selbsthilfegemeinschaft e. V.Wuppertal
  3. 3.UniversitätsrechenzentrumHeinrich-Heine-UniversitätDüsseldorfGermany

Personalised recommendations