Identifying gaps in sickle cell disease healthcare resources across hematology clinics in California

Abstract Sickle cell disease (SCD) represents a major health challenge, affecting more than 100 000 people in the United States. Patients develop severe systemic manifestations from vaso-occlusive episodes, leading to severe pain crises and reduction of life expectancy. Despite its prevalence, individuals with SCD face not only dire health complications but also encounter systemic barriers to healthcare access and treatment. This exploratory study aims to provide preliminary insights into these challenges by examining the healthcare landscape for SCD patients in California, focusing on the accessibility and distribution of hematology clinics’ resources. Through a collaborative multi-site survey conducted, the study gathered insights from 44 hematology clinics. We explored adherence to treatment guidelines, the availability of specialty referrals, support services, clinic operational hours, and the impact of patient population size on service provision. The findings reveal potential gaps in guideline adherence, specialty referrals, and clinic operation times in clinics that serve ≤40 SCD patients. There is a scarcity of support roles such as community health workers and healthcare navigators across all clinics regardless of SCD population size. These preliminary insights underscore the need for further research and strategic interventions to improve access to comprehensive care and support for SCD patients. By highlighting potential disparities faced by SCD patients in California, this study provides a foundation for public health institutes to assess healthcare resources and develop effective solutions to enhance patient outcomes and quality of life.