Perspectives of individuals with sickle cell disease on barriers to care.

ABSTRACT:

Introduction

Sickle cell disease (SCD) is an inherited hemoglobinopathy that predominantly affects African Americans in the United States. The disease is associated with complications leading to high healthcare utilization rates, including emergency department (ED) visits and hospitalizations. Optimal SCD care requires a multidisciplinary approach involving SCD specialists to ensure preventive care, minimize complications and prevent unnecessary ED visits and hospitalizations. However, most individuals with SCD receive sub-optimal care or are unaffiliated with care (have not seen an SCD specialist). We aimed to identify barriers to care from the perspective of individuals with SCD in a multi-state sample.

Methods

We performed a multiple methods study consisting of surveys an

SUBMITTER: Phillips S 

PROVIDER: S-EPMC8942270 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature