Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium

Abstract

BACKGROUND: The SickleInAfrica consortium has developed multi-level Standards of Care (SoC) guidelines for SCD spanning primary, secondary, and tertiary services. However, their successful implementation may be hindered by health system limitations, patient-level factors, and social determinants of health. OBJECTIVES: To identify and categorise barriers to SCD care using the biopsychosocial framework and map the barriers to the SoC guidelines developed by the Sickle Pan-African Research Consortium (SPARCo). The goal was to identify public health, clinical, programmatic and research priorities for SCD care in Africa. METHODS: A scoping review was conducted to identify barriers to SCD care. The identified barriers were categorised into biopsychosocial domains and mapped to the SPARCo SoC guidelines. RESULTS: Fifty-four studies were included in the scoping review. Social barriers were the most frequent (85.2%), followed by operational (74.1%), psychological (40.7%), and biological (14.8%). Common barriers included the invisible nature of pain, medication stockouts, negative attitudes from clinical staff; inadequate mental health support; stigma, and low SCD literacy among healthcare workers. Most barriers clustered around three SPARCO SoC domains: health maintenance and preventive therapy, management of acute complications, and specialised protocols. Suggested priorities include integrating SCD care into existing vertical programmes, co-designing paediatric-to-adult care transition models with patient support groups, and workforce training. CONCLUSION: Leveraging existing, well established vertical programmes in healthcare systems, such as maternal health, immunisation and counselling services, could be a pragmatic pathway to scale up SCD services and minimising barriers to the implementation of the SPARCo SoC.

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