Patients' Families' Perceptions of Lupus in Sub-Saharan Africa

Lupus is an autoimmune disease affecting the connective tissue. Its clinical and biological polymorphism is often misunderstood by patients and families and can lead to treatment interruption and a decision to turn to alternative medicine. We used a questionnaire to assess the degree of knowledge of this disease of family members living with lupus patients. Of the 56 lupus patients receiving regular follow-up at our hospital, 123 members of 30 of their families (53.5%) participated. Overall, among these families, 81.5% of the participants perceived the disease as predominantly non-mystical, 72.3% as hereditary, 87.9% as non-contagious, and 60.9% as curable ; 90.2% considered it compatible with pregnancy, another 90.2% with work, and 73.9% with sports activity. The principal clinical signs mentioned involved joint (22.7%), skin (13%), and finger-related (11.3%) disorders, with renal disease (9.7%), heart disease (8.1%), and general signs (8.1%) mentioned most frequently as the main complications. The best-known medications for disease control were corticosteroids (20.3%) and hydroxychloroquine (17%). Family members considered non-adherence (53.6%) the most frequent factor in disease flares. More than half were unaware of the life expectancy associated with this disease, but 30.1 % thought it was lower than that of the national population of Gabon - 70 years. Only 64 (52%) of the respondents had seen documentation about lupus, mostly through the Internet (65.6%). Lupus is not a disease that families know and understand well.