From Stigma to Suffering: Stigma, Health-Related Quality of Life, and Healthcare Access in Sickle Cell Disease-A Global Systematic Review.
Sickle cell disease (SCD) is a chronic inherited disorder characterized by recurrent pain, organ damage, and reduced life expectancy. Beyond its clinical burden, individuals with SCD experience significant stigma that adversely affects psychological well-being, health-related quality of life (HRQoL), and healthcare access. This systematic review synthesizes global evidence on the impact of stigma on HRQoL and healthcare access among individuals with SCD. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines, peer-reviewed studies published between January 2010 and December 2025 were retrieved from PubMed, Scopus, Embase, and PubMed Central. A total of 53 studies (27 qualitative, 18 quantitative, 8 mixed methods) met the inclusion criteria. Four key stigma domains were identified: clinical mistrust and dismissal, internalized stigma and psychological distress, intersectional marginalization, and structural invisibility within healthcare systems. Across diverse settings, stigma was consistently associated with reduced HRQoL, delayed healthcare seeking, and weakened patient-provider relationships. Stigma operates across multiple levels, reinforcing health inequities. Addressing stigma through patient-centered care, community engagement, and policy reforms is essential to improve outcomes and ensure equitable healthcare access for individuals with SCD. PROSPERO Registration: CRD420251232621.