Background and aims Chronical illness perception and difficulties in everyday life due to disease and medications were explored by the first italian ONLINE SLE SURVEY, designed to assess chronic pain impact and health-care provision quality in Italy.
Methods Online questionnaire was created through Qualtrics, setting geographic data, disease duration, age at diagnosis, comorbidity, disability degree, care practices, treatments, subjective incidence and characteristics of pain. SLE patients were advertised by social media. Participation was voluntary and anonymous.
Results 550 SLE patients provided complete data; F 94.7%, M 5.3%; mean age 33 y. (14–82 y.); first SLE diagnosis at mean age 29 y.: 84% received SLE diagnosis between 18–42 y.; 36% comorbidity with other (1-6) autoimmune conditions. SLE impact on life is relevant, with specific problems and needs at different disease stage. Stress of life: relevant and worsening illness conditions; frequent relational problems. Need for psychological support: 54%. Osteoarticular pain is main symptom condition (83%), but only 54% use drugs for pain control. Physicians seem not responding to patients‘ request to take into account impact of pain. Women workers face many difficulties due to many combined factors which severely reduce access to proper care
Conclusions Health-care current model doesn’t allow respect of SLE patients complex needs: most remain dissatisfied, affecting quality of life and doctor-patient concordance. SLE SURVEY highlights importance of competent clinical listening by physicians and capacity to hold patient’s crisis. GRUPPO ITALIANO LES – a volunteer patients’ organisation - established ONLINE SLE SURVEY practice to explore current facets, development of patients’ needs, and set social-health policies
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