Patient perspectives on rheumatic and musculoskeletal diseases: insights from a large-scale survey.

Introduction/objectives: Rheumatic and musculoskeletal diseases (RMD) are prevalent among Arabic-speaking patients in the Middle East and North Africa (MENA), yet their perspectives remain underexplored. This study examines patient experiences and perspectives.

Method: A cross-sectional survey was developed using pilot testing with clinimetric sensibility assessment to ensure clarity and relevance, and the Open-Source Metric for Measuring Arabic Narratives (OSMAN) to assess readability. The Checklist for Reporting Internet E-Surveys (CHERRIES) was used to enhance the quality of the survey. The survey was distributed via social media to Arabic-speaking patients with self-reported RMDs. Collected data included demographics, disease characteristics, medication use, treatment satisfaction factors, perceived causes, and patient concerns.

Results: Of the 1050 responses received, 456 were complete and included in the analysis. Most respondents were female (81.4%) and between the ages of 25 and 44 (63.4%). The most frequently reported diseases were systemic lupus erythematosus, rheumatoid arthritis, and ankylosing spondylitis. Nearly all (97.1%) used medications within the previous three months, primarily hydroxychloroquine, glucocorticoids, and biologics. Key factors influencing treatment satisfaction were pain relief, laboratory result discussions, sleep quality, and mood improvement. Patients perceived immune system abnormalities (76.5%), psychological factors (54.8%), and genetics (41.7%) as primary disease causes. Main concerns included fear of disease complications, adverse drug reactions, and being a burden to others. Rheumatologists and internet search engines were the primary sources of information for patients. Most avoided alternative medicine, while 33.3% used it.

Conclusion: This survey is the first and largest in the MENA region, providing valuable insights into patient perspectives on RMD. It highlights the need for holistic management, enhanced education, and supportive services to improve quality of life. Key Points • The most commonly perceived causes of rheumatic and musculoskeletal diseases among patients with RMD were immune system abnormalities, psychological factors, genetic/hereditary influences, and envy. • Patients' top concerns included fear of future complications, adverse drug reactions, becoming a burden to others, physical disability, and issues related to marriage and childbirth. • Key factors influencing treatment satisfaction included pain relief, discussions of laboratory results, sleep quality, and mood improvement. • Approximately one-third of patients had consulted practitioners of complementary and alternative medicine.