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

backgroundThe 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.

objectivesTo 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.

methodsA 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.

resultsFifty-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.

conclusionLeveraging 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.