Patients with sickle cell disease (SCD) frequently deal with health disparities, including inequities in funding, stigma, and worse health outcomes. This study was done to assess the quality of outpatient and emergency medical care available to adults and adolescents with SCD. The research was performed as part of the Sickle Cell Disease Implementation Consortium.
The researchers provided patients with a one-time survey related to pain interference with daily living, the quality of care received, and self-efficacy in managing their pain. The survey was given to 440 patients ages 15 to 50. The participants provided information about their perception of the quality of care they received in emergency department and outpatient settings.
A majority of the participants were female and Black at 55.7% and 97.3%, respectively. Younger participants reported better experiences with emergency departments. However, the participants were overall less pleased with their emergency department care experiences than their outpatient care experiences.
The researchers concluded that negative perceptions of emergency department care might hinder individuals with SCD from seeking future emergency care or engaging in their care in a maximally curative manner. They suggest implementing initiatives that can improve care for this population, especially in the emergency setting .
Source: Kanter, J., Gibson, R., Lawrence, R. H., Smeltzer, M. P., Pugh, N. L., Glassberg, J., Masese, R. V., King, A. A., Calhoun, C., Hankins, J. S., & Treadwell, M. (2020). Perceptions of US Adolescents and Adults With Sickle Cell Disease on Their Quality of Care. JAMA Network Open, 3(5), e206016. https://doi.org/10.1001/jamanetworkopen.2020.6016