Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care

Key Points Question What are the barriers to care experienced by adolescents and adults living with sickle cell disease in the United States? Findings This survey study conducted by the Sickle Cell Disease Implementation Consortium enrolled 440 adolescents and adults in 7 different states and found that most respondents were pleased with their usual care physicians but had negative experiences in acute care settings. Pain and the frequency of pain episodes were associated with patient-reported self-efficacy, further emphasizing the association of severe pain with poor outcomes in this population. Meaning A negative perception of care in the emergency department setting may be a barrier for seeking care among adolescents and adults living with sickle cell disease.