Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care
authors: Evensen CT, Treadwell MJ, Keller S, Levine R, Hassell KL, Werner EM, Smith WRsummary/abstract:
Documented deficiencies in adult sickle cell disease (SCD) care include poor access to knowledgeable providers and inadequate treatment in emergency departments (EDs).The aim of this study was to create patient-reported outcome measures of the quality of ambulatory and ED care for adults with SCD.We developed and pilot tested SCD quality of care questions consistent with Consumer Assessments of Healthcare Providers and Systems surveys. We applied psychometric methods to develop scores and evaluate reliability and validity.The participants of this study were adults with SCD (n = 556)-63% aged 18 to 34 years; 64% female; 64% SCD-SS-at 7 US sites.The measure used was Adult Sickle Cell Quality of Life Measurement information system Quality of Care survey.Most participants (90%) reported at least 1 severe pain episode (pain intensity 7.8 ± 2.3, 0-10 scale) in the past year. Most (81%) chose to manage pain at home rather than the ED, citing negative ED experiences (83%). Using factor analysis, we identified Access, Provider Interaction, and ED Care composites with reliable scores (Cronbach α 0.70-0.83) and construct validity (r = 0.32-0.83 correlations with global care ratings). Compared to general adult Consumer Assessments of Healthcare Providers and Systems scores, adults with SCD had worse care, adjusted for age, education, and general health.Results were consistent with other research reflecting deficiencies in ED care for adults with SCD. The Adult Sickle Cell Quality of Life Measurement Quality of Care measure is a useful self-report measure for documenting and tracking disparities in quality of SCD care.organization: American Institutes for Research, Chapel Hill; University of California San Francisco Benioff Children's Hospital Oakland; University of Colorado; National Heart, Lung, and Blood Institute, Bethesda; Virginia Commonwealth University, Richmond
read more full text
Alan D. Michelson, MDDr. Michelson is Professor of Pediatrics...
Yogen Saunthararajah, MDYogen Saunthararajah, MD, is a staff in ...
Sancilio Pharmaceuticals Company, Inc. (SPCI) Receives Rare Pediatric Disease Designation From the US Food and Drug ...Sancilio Pharmaceuticals Company, Inc. (...
The Sickle Cell Transplant Advocacy & Research Alliance (STAR)The Sickle Cell Transplant Advocacy &...
Diving into the genetics of Sickle cell diseaseIn recent years, genetics has become a h...
Blood Industry Joins Together During Coronavirus Challengeshttps://www.youtube.com/watch?v=Z3V_DX_A...
Hospitals See No Link Between US Opioid Crisis and Patients’ Use of Treatment, Study ReportsThe U.S. opioid epidemic is not linked t...
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.