• Join Today!

Become a member and connect with:

  • An Active Online Community
  • Articles and Advice on SCD
  • Help Understanding Clinical Trials
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

read more

To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.