Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are common autoimmune diseases (AD) that affect joints and have multi-organ involvement that results in disability, morbidity, and increased mortality. Both conditions are known to cause a wide range of ocular manifestations. Antimalarial drugs, mainly hydroxychloroquine (HCQ), are among the treatment options for AD that is uniquely characterized by retinopathy as a main side effect. This study examines self-efficacy levels in autoimmune disease patients who were or are currently treated with HCQ and related factors such as patient education, communication with the physician, self-education, and ability to cope with the disease.
This cross-sectional internet-based questionnaire aimed to assess the knowledge and experience of autoimmune disease patients in Saudi Arabia of the ocular effects of hydroxychloroquine (HCQ). Among the 245 respondents, discontinuation of the drug was linked to its ocular toxicity in approximately 7.3%. Most patients had taken HCQ for a period longer than five years, exceeding a dose of 5 mg/Kg. A lack of education and physician communication about medication toxicity was reported by approximately 40.8% of the participants. Despite the knowledge about HCQ retinopathy, the drug is prescribed to autoimmune disease patients at an inappropriate dosage. Knowledge obtained from physicians’ communication may improve the health outcomes of chronically ill patients. Rheumatologists and ophthalmologists should work together to recognize patients at risk of hydroxychloroquine toxicity and ensure they receive proper education and adhere to periodic follow-up.
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