Quality of Care Among Adolescents and Adults With Sickle Cell Disease in the United States: Analysis From the Sickle Cell Disease Implementation Consortium
Document Type
Article
Publication Date
5-29-2020
Publication Title
JAMA Network Open
DOI
10.1001/jamanetworkopen.2020.6016
Abstract
Importance
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.
Objective
To assess the SCD-related medical care experience of adolescents and adults with SCD.
Design, Setting, and Participants
This one-time survey study evaluated pain interference, quality of health care, and self-efficacy of 440 adults and adolescents (aged 15 to 50 years) with SCD of all genotypes and assessed how these variables were associated with their perceptions of outpatient and emergency department (ED) care. The surveys were administered once during office visits by trained study coordinators at 7 of 8 SCDIC sites in 2018.
Results
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. Of 435 participants, 287 (66.0%) reported requiring an ED visit for acute pain in the previous year. Respondents were less pleased with their ED care than their usual care clinician, with approximately half (146 of 287 [50.9%]) being satisfied with or perceiving having adequate quality care in the ED. Participants also noted that when they experienced severe pain or clinician lack of empathy, this was associated with a negative quality of care. Age group was associated with ED satisfaction, with younger patients (<19 vs 19-30 and 31-50 years) reporting better ED experiences.
Conclusions and Relevance
These results suggested that a negative perception of care may be a barrier for patients seeking care. These findings underscore the necessity of implementation studies to improve access to quality care for this population, especially in the acute care setting.
Recommended Citation
Kanter, Julie, 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.
2020.
"Quality of Care Among Adolescents and Adults With Sickle Cell Disease in the United States: Analysis From the Sickle Cell Disease Implementation Consortium."
JAMA Network Open, 3 (5).
doi: 10.1001/jamanetworkopen.2020.6016
https://digitalcommons.georgiasouthern.edu/hpmb-facpubs/328
Comments
Georgia Southern University faculty member, Raymona Lawrence co-authored Quality of Care Among Adolescents and Adults With Sickle Cell Disease in the United States: Analysis From the Sickle Cell Disease Implementation Consortium.