A qualitative examination of secondary prophylaxis in rheumatic heart disease: Factors influencing adherence to secondary prophylaxis in Uganda

Background Rheumatic heart disease (RHD) is the most common cause of heart disease among Ugandans age 15 to 49 years. Secondary prophylaxis with monthly injection of benzathine penicillin is effective in preventing recurrence of acute rheumatic fever and worsening of RHD, but adherence rates are poor in Uganda. Objectives This study sought to identify health behaviors, attitudes, and health care system factors that influence adherence to RHD secondary prophylaxis. Methods We conducted 5 structured focus groups with 36 participants on monthly penicillin injections for RHD in Kamplala, Uganda. Transcripts were analyzed using qualitative description analysis and health behavior models. Results Most participants were female (64%), from an urban area (81%), and had family income less than US$1 daily (69%). Ages ranged from 14 to 58 years. Median prophylaxis duration was 1.42 years and 58% were adherent (≥80% of injections). Key facilitators include perceived worsening of disease with missing injections, personal motivation, a reminder system for injections, supportive family and friends, and a positive relationship with health care providers. Barriers to adherence include lack of resources for transportation and medications, fear of injection pain, poor patient-provider communication, and poor availability of clinics and providers able to give injections. Conclusions We identified key facilitators and barriers to secondary prophylaxis for RHD from the patient perspective framed within the socioecological model. Our findings provide direction for intervention development to improve national RHD secondary prophylaxis.