Patient-Reported Outcomes of Ugandans Living with Autoimmune Rheumatic Diseases

AbstractPurposeThis study aimed to assess the patient–reported outcomes (PROs) in rheumatic patients attending two tertiary rheumatology clinics in Uganda.MethodsA cross-sectional, clinical audit of patients aged 16 years or older with a confirmed diagnosis of rheumatic disease and receiving disease modifying anti-rheumatic drugs (DMARDs) was conducted between September and December 2020. Health index and overall self-rated health status were assessed using the ED-5D-5L tool. Comparisons for variables was performed using Student’s t-test or Mann-Whitney U for continuous numerical data while categorical data was compared using either Χ2 tests or Fisher’s exact tests as appropriate.ResultsWe enrolled 74 eligible patients: 48 (64.9%) had rheumatoid arthritis (RA), 14 (18.9%) had systemic lupus erythematosus (SLE), and 12 (16.2%) had other autoimmune rheumatic disorders. Majority (n=69, 93.2%) were female with a mean ±SD age of 45 ± 17 years. Fourteen (18.9%) patients were on concomitant herbal medication while using DMARDs and 26 (35.1%) self-reported at least 1 adverse drug reactions to the DMARDS. Any level of problem was reported by 54 (72.5%) participants for mobility, 47 (63.5%) for self-care, 56 (75.6%) for usual activity, 66 (89.1%) for pain and discomfort, and 56 (75.6%) for anxiety/depression. Patients with SLE had higher median health index compared to those other autoimmune rheumatic disorders (p<0.0001). Overall self-rated health status was comparable across clinical diagnoses (p=0.2), but better for patients who received care from private (Nsambya Hospital) compared to public hospital (Mulago Hospital) (65 vs. 50, p=0.009).ConclusionThere is a substantial negative impact of autoimmune rheumatic diseases on quality of life of patients, especially those receiving care from a public facility in Uganda.Clinical SignificanceAdverse drug reactions to DMARDs was reported by more than one-third of the patientsSLE patients have better quality of life compared to patients with other autoimmune rheumatic disease.Concomitant use of herbal medication is common and associated with lower health index and lower overall self-rated health status.Autoimmune rheumatic diseases impose a heavy financial burden on affected patients, over 70% of the study patients required financial support for management of their disease and a high proportion of these patients were not on their DMARD therapy the week prior to their scheduled clinic appoints.