Multiple Perspectives on Barriers to Care of People Living with Haemophilia in Nigeria

Background: Evidence shows that most people living with haemophilia (PLwH) in Nigeria do not know enough about the condition and face some barriers. Objectives: This study explored the barriers related to the care of PLwH, as a part of a needs assessment study. Methodology: This exploratory mixed methods study used surveys and focus group discussions (FGD) to evaluate the perceptions of educational, technical, financial and psychosocial barriers facing PLwH. Participants included haemophilia patients (i.e. PLwH) and healthcare providers (HCP) in southern Nigeria. Quantitative data was analyzed using descriptive and inferential, while thematic analysis was used for qualitative data. Results: A total of 219 individuals participated in the study (PLwH – 130; HCP – 89). There were divergent views between the two groups of participants (i.e. PLwH and HCPs) regarding the educational barriers. About 51% (66/130) of PLwH agreed that the HCPs did not provide them with adequate education about haemophilia while only 33% (30/89) of HCPs shared that view; Z =2.5619 with p-value of 0.01. Many participants in both groups agree that HCPs generally lacked adequate training to manage haemophilia (PLwH-46%, 60/130; HCP – 46%, 41/89). Significantly more HCPs (76% of 89) agreed that PLwH had challenges related to access of basic treatment (i.e. clotting factors) compared to the perception of PLwH (60% of 130), Z = 2.42 and p=0.007. Some common themes from the data included public awareness, access to medications, challenges with lifestyle and anxiety/depression. Conclusion: Although hemophilia is a rare disease it affects a significant number of people in Nigeria to warrant increasing attention. This mixed methods study sought to explore the barriers related to haemophilia in southern Nigeria. One approach to address the educational barriers is to invest in the continuing education of HCPs. Expanding the number of haemophilia treatment centers in Nigeria would help address many technical barriers.