Sickle cell disease (SCD) is the most common monogenetic condition in the United States (US) and one that has been subjected to a history of negative bias. Since SCD was first described approximately 120 years ago, the medical establishment has, directly and indirectly, harmed patients by reinforcing biases and assumptions about the disease. Furthermore, negative biases and stigmas have been levied upon patients with SCD by healthcare providers and society, researchers, and legislators. This article will explore the historical context of SCD in the US; discuss specific issues in care that lead to biases, social and self-stigma, inequities in access to care, and research funding; and highlight interventions over recent years that address racial biases and stigma. 

The Bias of Medicine in Sickle Cell Disease.

Abstract Sickle cell disease (SCD) is the most common genetic disorder in the United States, affecting nearly 100,000 Americans, with the majority of affected individuals identifying as Black. Studies have shown that both children and adults with sickle cell disease face stigmatization resulting in low-quality care stemming from institutional racism and implicit bias by clinicians. Clinician biases often result from a lack of awareness of their own racial identity, failure to develop an anti-racist or social justice lens, and absence of skills to mitigate racist practices and policies. The Sickle Treatment and Outcomes Research in the Midwest (STORM) multi-state regional learning network developed a health equity training curriculum that was delivered as a continuing education learning series using the Project ECHO ® virtual telementoring framework supplemented with an online learning management system. The curriculum addressed foundations of race, racism, and whiteness along with social justice strategies for the individual and institutional level and was piloted with two clinician cohorts to assess its feasibility, acceptability, and the potential impact on clinician self-efficacy. Feasibility and acceptability data, including qualitative feedback, suggest that this is a promising method for multidisciplinary clinicians and trainees for raising self-awareness about racism and bias, providing a safe community for self-reflection, and building skills to address inequities within healthcare settings. 

A health equity ECHO for clinicians of individuals with sickle cell disease

The Role of the Nurse Case Manager in the Pediatric Management of Sickle Cell Disease

<h2>Abstract</h2><h3>Objectives</h3> The psychosocial aspects of chronic pain among youth with sickle cell are poorly described and may be better understood within a biopsychosocial model of chronic pain as applied to youth living with sickle cell disease. <h3>Design</h3> A systematic literature review was performed to synthesize the psychosocial factors contributing to chronic pain in this population. Criteria for study inclusion were primary quantitative research studies focused on psychosocial aspects of chronic pain among youth with sickle cell disease. <h3>Data sources</h3> PubMed, CINAHL, PsychINFO, and Scopus were searched for relevant articles. <h3>Review/Analysis methods</h3> Articles selected for full-text review were appraised for quality using the Joanna Briggs Institute Quality Appraisal Tools. Thirteen articles were included. <h3>Results</h3> Depression, anxiety, pain catastrophizing, pain coping, executive functioning, and functional impairment were prevalent in youth living with sickle cell disease and chronic pain. Research gaps included the influence of stigma, injustice, peer interactions, and school and work on chronic pain. <h3>Conclusions</h3> The biopsychosocial model of chronic sickle cell disease-related pain for youth was developed and modified based on the results of this systematic review to remind clinicians of the various factors to consider in clinical practice and spur additional research in this field. 

A Systemic Review of the Psychosocial Aspects of Chronic Pain in Youth With Sickle Cell Disease.

Pain specialists in the management of sickle cell disease: a call to action

Understanding Hydroxyurea Utilization in Sickle Cell Disease: Exploring Patient and Provider Attitudes and Beliefs

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The Bias of Medicine in Sickle Cell Disease.

Understanding Hydroxyurea Utilization in Sickle Cell Disease: Exploring Patient and Provider Attitudes and Beliefs