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scientific articles

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

key information

source: JAMA Network

year: 2020

authors: Julie Kanter, Robert Gibson, Raymona H Lawrence, Matthew P Smeltzer, Norma L Pugh, Jeffrey Glassberg, Rita V Masese, Allison A King, Cecelia Calhoun, Jane S Hankins, Marsha Treadwell


Sickle cell disease (SCD) is the most common inherited red blood cell disorder in the United States, and previous studies have shown that individuals with SCD are affected by multiple health disparities, including stigmatization, inequities in funding, and worse health outcomes, which may preclude their ability to access quality health care. This needs assessment was performed as part of the Sickle Cell Disease Implementation Consortium (SCDIC) to assess barriers to care that may be faced by individuals with SCD.

The SCDIC sites did not report the number of individuals approached to participate in this study; thus, a response rate could not be calculated. In addition, respondents were not required to answer every question in the survey; thus, the response rate per question differed for each variable. Of 440 individuals with SCD, participants were primarily female (245 [55.7%]) and African American (428 [97.3%]) individuals, with a mean (SD) age of 27.8 (8.6) years. The majority of participants (306 of 435 [70.3%]) had hemoglobin SS or hemoglobin S β0-thalassemia. Most respondents (361 of 437 [82.6%]) reported access to nonacute (usual) SCD care, and the majority of respondents (382 of 413 [92.1%]) noted satisfaction with their usual care physician.

organization: University of Alabama, USA; Augusta University, USA; Georgia Southern University, USA; University of Memphis, USA; RTI International, USA; Mt Sinai School of Medicine, USA; Duke University School of Nursing, USA; Washington University School of Medicine, USA; St Jude Children's Research Hospital, USA; Benioff Children's Hospital Oakland, USA

DOI: 10.1001/jamanetworkopen.2020.6016

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