Health journey of Nigerian patients with systemic lupus erythematosus

Abstract

BackgroundAlthough there is an increase in prevalence and incidence of lupus worldwide, the journey to diagnosis is unduly delayed. This delay is associated with worse outcomes. Sub-Saharan Africa has witnessed an increase in lupus diagnosis in recent decades with no specific data on the time to diagnosis of lupus.ObjectivesWe measured and documented lupus diagnostic delays, patients' experiences, and factors associated with delayed diagnosis and provided recommendations for early diagnosis.MethodsThis is a three-month cross-sectional study of 245 patients diagnosed with lupus who are members of a Nigerian lupus support group. Included participants fill out patients' administered questionnaire in a Google doc. The questionnaire captured all aspects of the study objectives. Four diagnostic journey intervals were defined. Delayed diagnosis was defined as a time interval from first symptoms to lupus diagnosis greater than or equal to 6 months.ResultsThe majority of participants were under 40 years of age (n-187, 76.3%) and predominantly female (n-226, 92.9%). About 53.9% of participants were diagnosed between 6 months and 2 years after their first symptoms, while 42% visited the first doctor within 6 months of symptom onset. Roughly half of the participants were referred to rheumatologists within 6 months of their visit to the last doctor, while 50.2% of the participants were diagnosed within 4 weeks of the rheumatologist's evaluation. Delayed diagnosis and delayed referral were documented in 80% and 66.9% of participants respectively. Low income (OR-7.4), internal organ manifestations (OR-4.5), and multiple doctors' visits (OR-11.6) were independently associated with delayed diagnosis.ConclusionsDiagnostic delay is observed in the majority of our patients. This delay is associated with multiple hospital visits, low income, and internal organ manifestations. There should be concerted efforts in SSA to improve the rheumatology workforce and incorporate non-specialists in clinical service delivery.

Keywords: Lupus; Sub-Saharan Africa; delayed diagnosis; journey; patient.