Barriers to Optimal Care for Cervical Cancer in the Democratic Republic of the Congo

PURPOSE Cervical cancer remains the number one cause of cancer death in sub-Saharan Africa and in the Democratic Republic of Congo (DRC) for both men and women, mainly due to ≈75% of cases being late stage at presentation. However, studies specific to patient’s lived experience from the unique cervical cancer landscape in the DRC are missing from the record. This study identifies patient-perceived barriers to timely optimal care, and the resulting psychosocial and economic burden among DRC cervical cancer survivors. METHODS We conducted in-depth semi-structured interviews with 18 cervical cancer survivors from a cohort across two DRC hospitals (one urban, one rural). Interviews were audio-recorded, transcribed, open-coded, then thematically analyzed by two independent coders using NVivo. We initially analyzed the primary outcome to identify barriers, which we then used to analyze the secondary outcome, disease burden. RESULTS Median age was 50 years; 61% were married and two-thirds had a secondary education or lived in rural areas. We identified three major themes out of 25 codes: (1) Financial and logistical barriers, as patients relied on personal funds for all cancer-related costs (eg, care, travel), leading to delayed/incomplete treatment; (2) Culturally-driven awareness gaps, with limited understanding of cervical cancer symptoms and treatment having delayed care seeking; and (3) Provider system barriers, where inadequate referral workflow/networks and prolonged patient navigation times hindered continuity of care and caused massive disruptions in care provision. These combined barriers often result in delayed care seeking and receipt, late stage at presentation, reportedly higher mortality, and perpetual substantial financial strain, mental, physical, and socioeconomical burdens for the patient and her family. CONCLUSION In these novel insights from the DRC, patients’ reliance on personal finances to cover the cost of care emerged as the major barrier to optimal care and subsequently contributed to the disease burden. Our findings stress the need for locally achievable solutions for clinical practice and cancer management policy, in addition to a universal health coverage to support cervical cancer care in the DRC. Future studies should focus on feasible strategies for community awareness programs, provider training and referral system strengthening, and patient navigation and transport support.