Exploring the patient journey to heart failure diagnosis in Uganda

Abstract Background Heart failure (HF) is becoming an urgent health issue in Uganda, but patients face barriers in early symptom recognition, accessing care, and sustainable disease management. Understanding patients’ journey to obtaining a diagnosis of heart failure is critical to improving pathways to care and early detection. Purpose We sought to explore the experiences of patients recently diagnosed with HF to guide interventions that could improve early detection and management of HF in Uganda. Methods For this qualitative, cross-sectional study, we conducted semi-structured interviews with 19 patients (47% female) diagnosed with HF in the prior three months across four regional referral hospitals in Uganda. The interview guide was adapted from the ShareHeart patient journey and piloted prior to use. All interviews were conducted in local languages preferred by study participants, audio-recorded, transcribed verbatim, and translated for analysis. An interdisciplinary team comprised of researchers from the US and Uganda conducted rapid assessment during data collection, and then independently coded the transcripts for thematic analysis using Delve (delvetool.com). Results Seven major themes emerged. (1) Delayed symptom recognition led patients to misattribute symptoms to aging, stress, or cultural beliefs like witchcraft. (2) Healthcare access and systemic challenges, such as long wait times and medication shortages, further delayed care. (3) Misdiagnoses and common comorbidities, including malaria, tuberculosis, and asthma, contributed to diagnostic delays of months to years. (4) Financial strain, driven by transportation costs and medication expenses, impacted patients’ healthcare-seeking journeys and ability to sustain follow-up care. (5) Sociocultural influences, including stigma and family dynamics, shaped patients’ perceptions of illness. (6) Knowledge and awareness gaps limited understanding of HF symptoms and management. (7) Long-term adaptations, such as lifestyle changes and coping mechanisms, reflected patients’ efforts to manage their condition. Despite these challenges, participants expressed a strong desire for greater public awareness of HF, culturally-tailored health education, and improved patient-provider communication. Conclusion This study highlights multi-level gaps in the patient journey to a diagnosis of heart failure in Uganda, including the need for improving diagnostic accuracy for HF, providing culturally-tailored health education for HF patients and their communities, and supporting simplified HF treatment regimens and self-care guidance to improve continuity of care. These findings will inform the implementation of an ongoing program to improve HF care in Uganda.