An Integrative Review: The Evolution of Provider Knowledge, Attitudes, Perceptions and Perceived Barriers to Caring for Patients with Sickle Cell Disease 1970–Now

Abstract

Approximately 100,000 Americans have sickle cell disease (SCD). In the USA, the majority of patients with SCD are of African descent. Due to persistent racial and ethnic disparities in healthcare in the USA, patients with SCD experience disproportionately more health inequities because of providers’ implicit biases regarding patient race. Lack of access to health insurance, lack of transportation to healthcare providers, and inadequate provider knowledge contribute to the morbidity and mortality of patients with SCD. The purpose of this integrative review was to analyze and synthesize the literature on providers’ knowledge, perceptions, beliefs, and attitudes toward patients with SCD. A modified (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) method was used to conduct a comprehensive review of the literature yielding 31 publications included in this review. Three connected, yet distinct areas of focus were identified: (1) providers’ knowledge, attitudes, and perceptions of patients with SCD; (2) providers’ perceived or true barriers to caring for patients with SCD; and (3) interventions to improve providers’ attitudes, perceptions, and care of patients with SCD. In each area of focus, research has evolved over time. Also included in this integrative review is a synthesis of measurement instruments used to assess provider knowledge, attitudes, perceptions, and perceived and true barriers to caring for patients with SCD. Adolescents with SCD who are transitioning from pediatric to adult care are at a particularly high risk for morbidity and mortality, so this review focused on the many opportunities that exist to advance the healthcare for young adults with SCD to improve patient outcomes later in life. This includes improving providers’ knowledge, perceptions, beliefs, and attitudes, and lessening the real or perceived barriers to care for patients with SCD.