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scientific articles

Improving the Quality of Care for Adolescents and Adults With Sickle Cell Disease—It’s a Long Road

key information

source: JAMA Network

year: 2020

authors: Charity Oyedeji, John J. Strouse


The World Health Organization defines quality of care as “the extent to which health care services provided to individuals and patient populations improve desired health outcomes.” To achieve this quality, the health care must be safe, effective, timely, efficient, equitable, and centered on people. Kanter et al surveyed 440 adolescents and adults with sickle cell disease (SCD) through 7 comprehensive programs widely recognized as leaders in the care of people with SCD. The results of the survey suggested significant gaps and dissatisfaction with care, especially in the emergency department.

Patient experience has a strong association with the perception of quality of care. Both pediatric and adult SCD populations reported dissatisfaction with care for reasons such as perceived racial discrimination, difficulties with access, and lack of clinician confidence and knowledge in managing SCD complications, especially pain. In the survey described, participants with severe pain or 4 or more pain episodes in the previous 6 months were much less likely to be satisfied with their scheduled nonacute appointments.

organization: Duke University School of Medicine, USA

DOI: 10.1001/jamanetworkopen.2020.6377

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