Patient-reported experience and health-related quality of life in patients with primary Sjögren's syndrome in Europe.

OBJECTIVES: The study aims to provide novel findings on geographic variation in the management of primary Sjögren's syndrome (pSS) in Europe, an underdiagnosed, long-term autoimmune disease. METHODS: Starting from the lack of comparable information on patients' experience, quality and efficiency of care delivered to pSS patients in Europe, the approach is to collect and analyse patients reported data from an international survey. To assess and compare access and quality of care to pSS along their care-path we developed and validated a questionnaire administered to a large cohort of pSS patients in selected European countries. Regression models have been applied to survey data to compare quality and volumes of care across Europe. RESULTS: Both follow-up and number of visits with a specialist of the patient are influenced by the severity of the disease with differences among countries. The results show some extent of variations in access and treatments delivered to pSS patients and also their perceived quality of life and satisfaction for SS care in Europe. CONCLUSIONS: Findings contribute to support healthcare professionals' decision making and the organisation of care delivery by taking into consideration the patients' point of view and preferences.