Medical Mistrust and Sickle Cell Disease: a Systematic Review

Background: Sickle cell disease (SCD) is a group of heritable conditions with significant morbidity, burden of disease management and healthcare delivery issues. Medical mistrust (MM) is a psychological outcome of healthcare delivery issues. The purpose of this review was to assess the concept of MM in the literature on SCD, summarize the findings and gaps, and was guided by three questions: 1) How has MM been measured and/or described in patients with SCD? 2) What factors have been described in the literature that predispose patients with SCD to develop MM? 3) What consequences or outcomes have been described because of MM in patients with SCD? Methods: The methodological framework of Arksey and O’Malley was used to review articles from PubMed, Scopus, Web of Science, CINAHL, PsycInfo, and EMBASE. Inclusion criteria were quantitative, qualitative, and mixed methods peer-reviewed studies published in English between 1994 and 2025; articles focused on patients with SCD and those that described concepts found in the existing MM instruments. Results: Forty-two studies were included; 26 were strictly qualitative, 11 were mixed methods, and 5 were strictly quantitative. No study used an existing MM measure; yet concepts from MM measures were described: group disparities and suspicion. Negative healthcare staff communication, poor pain control, transition of care, and lack of provider transparency predisposed patients toward MM. Outcomes of MM included avoidance of care, nonadherence, psychological distress, and maladaptive coping. Discussion: This review highlights the predictors and outcomes of MM in patients with SCD and identifies the notable gaps in the state of the SCD MM literature. More studies are needed to assess the development and consequences of MM in patients with SCD. The findings highlight the experiences of patients with SCD and offer researchers insights into possible interventions to decrease MM and improve outcomes.