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 in healthcare access and treatment. This
study aims to illuminate 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 significant 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 disparities underscore the
urgent need for strategic interventions to improve access to
comprehensive care and support for SCD patients, advocating for a
multidisciplinary approach to healthcare delivery that addresses the
complex needs of this population. This study not only highlights the
disparities faced by SCD patients in California but also provides a
model for public health institutes to assess healthcare resources and
implement effective solutions to enhance patient outcomes and quality of
life.