title: Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care.
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.
authors: American Institutes for Research, Chapel Hill, NC Department of Hematology/Oncology, University of California San Francisco Benioff Children's Hospital Oakland, Oakland, CA Redwood City, CA Division of Hematology, University of Colorado, Aurora, CO Blood Epidemiology and Clinical Therapeutics Branch, Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute, Bethesda, MD Division of General Internal Medicine, Virginia Commonwealth University, Richmond, VA.
authors: Christian T
authors: CT
authors: Evensen
authors: Marsha J
authors: MJ
authors: Treadwell
authors: San
authors: S
authors: Keller
authors: Roger
authors: R
authors: Levine
authors: Kathryn L
authors: KL
authors: Hassell
authors: Ellen M
authors: EM
authors: Werner
authors: Wally R
authors: WR
authors: Smith
mesh_terms: D000293:Adolescent; D000328:Adult; D000553:Ambulatory Care / Q000592:standards*; D000755:Anemia, Sickle Cell / Q000628:therapy*; D003142:Communication; D003430:Cross-Sectional Studies; D004636:Emergency Service, Hospital / Q000592:standards*; D005163:Factor Analysis, Statistical; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D000071066:Patient Reported Outcome Measures; D010817:Physician-Patient Relations; D010865:Pilot Projects; D011594:Psychometrics; D011787:Quality of Health Care; D055815:Young Adult