Background Morbidity due to high disease activity, damage, as well as co-morbidities in patients with lupus erythematosus (LE) lead to impairments and disabilities, limiting activities of daily living. In Germany compensations for persons with disabilities according to the EU charter of fundamental rights are complex. The prerequisite for compensation is an official governmental approval of the disability which grades severity from 30 to 100%.
Objectives The aim was to highlight possible influential factors for limitations and disability in patients with long-standing lupus.
Methods The LuLa-Study is a longitudinal cross-sectional survey of the German LE self help community on a multitude of LE associated factors that is being conducted annually by means of a self-reported questionnaire since 2001 and is ongoing. Data on the disability status have been collected in the reference periods 2003 (n=864) and 2009 (n=604) with census of the application for disability, the grade of disability, the year of approval and the retirement because of disabilities from LE or other reasons.
Results In 2009 76.3% had submitted an application for disability, 11.0% more than in 2003, of which more than 96.5% were approved (grade of at least 30%). The mean grade increased from 59.0% in 2003 to 61.8% in 2009.
414 pts (66.8% of the 2009 cohort) completed both assessments in 2003 and 2009. Within this 6-year interval 10.9% (n=45) made an application for disability, of which only 3 application were not approved. The mean grade of disability was 50.7±18.5% (30-100), the mean age at receipt was 44.4±15.0 years and the mean disease duration 9.4±6.4 years. When comparing these patients with a new application for disability with those that had never made an application in 2009 (n=156) they showed a lower score in the mental component summary of the SF-12 (SF-12 MCS), a higher number of specific lupus medication and co-medication, a higher disease activity (VAS 0-10) and more damage (SLICC) (all p<0,05).
In 224 patients a 6-year follow-up of disability was possible. 23.7% showed an increase and 2.7% a decrease in the grade of disability whereas the rest remained stable. The mean percentage increase in grade of disability was 20.0%, the mean percentage decrease 11.7%. The group with a percentage increase showed significantly more co-medications and differed significantly in age at approval, with the highest mean age in the group with increased percentage (44.0 years) (31.2 years in the decrease % group, 39.8 years in the stable group).
Conclusions Accumulated damage, disease activity, the number of lupus medication and co-medication, and SF-12 MCS appear to play a role in the evaluation and approval of disability, whereas a higher number of co-medications as well as a higher age at approval seem to predict a deterioration of disability over time. Disease control with avoidance of damage and development of co-morbidities might improve quality of life in patients and reduce the economic burden by disabilities. The relationship between the investigated parameters and other influencing factors need further evaluation.
Sander O et al. [Disability in lupus erythematosus]. Versicherungsmedizin. 2006; 58(3):120-5.
Fischer-Betz R et al. [Lupus in Germany: analysis within the German lupus self-help organization (LULA)]. Z Rheumatol. 2005; 64(2):111-22.
Disclosure of Interest None Declared