Quality of psoriasis care from the patients' perspective - results of the national health care study PsoReal

Background: Two national surveys conducted in 2005 and 2007 indicated deficits in psoriasis care in Germany, although a significant improvement could be observed. When assessing health care provision it is crucial to take the patient's perspective into consideration. Therefore different approaches may be necessary. Objectives: (1) To survey reliable data on the health care situation of psoriasis vulgaris from the perspective of patient organisation members. (2) To compare the health care of patient organisation members 2008 with patients surveyed in dermatological centres 2005 and 2007. Methods: A nationwide, non-interventional, cross-sectional study: 2,449 patient members of the "Psoriasis-Bund e.V.", the largest patient organization for psoriasis in Germany, were interviewed. Data collected: sociodemographics; medical history; therapies; health-related quality of life; patient-defined treatment benefit. Results: Quality of life was found to be considerably impaired (DLQI>10) in 23.6% of patients (compared to 34.1%/28.2% in 2005/2007). 49.1% had received systemic therapeutics (vs. 33.0%/47.3% in 2005/2007). On average, the participants had been absent from work for 8 days in the previous year because of their psoriasis (vs. 3.9/4.0 days in 2005/2007). Conclusion: Using the same indicators, the members of the patient organisation participating in 2008 rated their health care situation better than patients surveyed in 2005 and 2007. This may be attributed to the fact that members of patient organisations are better informed, which can lead to a more differentiated perception of burden of disease and better access to health care facilities.