Review Article

Quality of Life of Persons Living with Bleeding Disorders in Africa: A Scoping Review

Abstract

Background: Bleeding disorders such as haemophilia, von Willebrand disease, and other rare coagulation disorders are lifelong conditions that significantly affect physical, psychological, and social wellbeing. In Africa, limited access to diagnosis, treatment, and comprehensive care may further compromise quality of life (QoL). However, evidence on QoL among persons living with bleeding disorders across the continent remains fragmented. Objective: This scoping review aims to map existing evidence on the quality of life of persons living with bleeding disorders in Africa, identify key determinants and gaps, and highlight implications for policy and future research. Methods: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta Analyses extension for Scoping Reviews (PRISMA-ScR). Eligibility criteria were guided by the Population–Concept–Context (PCC) framework. We included studies involving persons with bleeding disorders in African settings reporting QoL outcomes. Searches were performed in PubMed/MEDLINE, Scopus, Web of Science, African Journals Online (AJOL), and grey literature. Data were charted and synthesized descriptively. Results: A total of 21 studies were included, representing Nigeria, South Africa, Kenya, Cameroon, and Egypt. QoL domains assessed included physical functioning, pain, mental health, and social relationships. Common instruments used were WHOQOL-BREF, SF-36, EQ-5D-5L, and Haem-A-QoL. QoL was generally moderate to low, influenced by pain, joint damage, treatment burden, and limited access to comprehensive care. Few studies addressed paediatric populations or women, and certain domains such as sleep, energy, and leisure activities were under-assessed. Conclusion: Persons with bleeding disorders in Africa experience moderate to low QoL, constrained by limited access to care and treatment burden. Region-specific interventions, culturally adapted QoL measurement tools, and patient-centred care models are critical to improving outcomes and informing health policy.