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Journal of patient experience · 2026

Sources of Knowledge, Family and Peer Support, Disclosure, and Posting on Social Media Platforms Among Patients with Systemic Autoimmune Rheumatic Diseases (SARDs): A Survey-Based Cross-Sectional Study.

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Alahmari Hana, Almaabadi Kholoud, Hafiz Waleed, Alqahtani Abdulaziz, Alqahtani Mohammed, Alayidh Meshal, Abudasir Anas, Alhayani Ali, Alqahtani Faisal

Аннотация

Systemic autoimmune rheumatic diseases (SARDs), like rheumatoid arthritis and systemic lupus erythematosus, impose significant burdens on patients. This cross-sectional survey explores knowledge sources about SARDs, emotional and practical support from family and peers, and willingness to disclose their condition publicly, particularly through social media, among a Middle Eastern population. A descriptive, cross-sectional study was conducted at the University Hospital (Abha), the University Hospital (Makkah), and Alhabib Private Hospital (Jeddah), involving 301 adults aged 18 to 50 with SARDs. A structured questionnaire assessed sociodemographic data, clinical information, support systems, and disclosure practices. Data were analyzed using SPSS v25.0 (P < .05). In total, 84.7% of participants received disease information from their treating physicians, while 50.2% turned to social media. Over half (55.1%) felt supported by families, and 49.5% noted workplace cooperation. However, 32.2% cited fear of stigma, and 14.6% felt like a burden as barriers to disclosure. Enhancing patient education, expanding support groups, and raising awareness about autoimmune diseases are vital for improving social support and encouraging disclosure without stigma.

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

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