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Comparison of Adult and Adolescent Quality of Ambulatory and Emergency Care in Sickle Cell Disease: Ascq-Me and the SHIP-HU Study

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source: American Society of Hematology

year: 2017

authors: Wally R. Smith, Donna k McClish, Richard Lottenberg, Ian Chen, Marsha J. Treadwell, San Keller, India Sisler, Shirley Johnson, Ding-Yu Fei, Daniel Sop Mouaffo

summary/abstract:

Quality of care (QOC) has been anecdotally reported as poor overall for sickle cell disease (SCD), especially in the Emergency Department (ED), and poorer for adults versus adolescents. We measured overall, ED, and ambulatory QOC ratings using the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) QOC measures. We compared patients’ overall QOC rating to national Medicare and adult Medicaid population norms. We compared ambulatory to ED QOC, and compared care in adult oriented settings versus pediatric oriented settings.

Methods: All patients (N=186, 55% female) were age 15 or older and enrolled in the Start Healing in Patients with Hydroxyurea (SHIP-HU) clinical trial, which required them to see a SCD specialist. Patients were either adolescents and adults in 3 adult clinic sites (A-Cl), or adolescents seen in 3 pediatric clinic sites (P-Cl). At baseline, patients rated overall QOC (0-10), and several items of QOC (1-4 or 1-5, anchored with descriptors: 4 or 5= most positive) as part of ASCQ-Me.

Results: At baseline, 80.6% of SHIP-HU enrollees were on HU. In the past 12 months, 91.7% of patients had a usual care doctor or nurse; 95.2% said their usual provider treated a lot of SCD. Satisfaction with ED visits was less than satisfaction with ambulatory visits for all enrollees (mean 3.02 vs. 3.68, p<0.0001), for A-Cl, where the ED ratings were the lowest of all ratings reported (2.93 vs. 3.62, p<0.0001), and for P-Cl, though this difference was not significant (3.42 vs. 3.88, p=0.0781). Overall QOC ratings indicated the worst care (0-6) for 20.2% of patients vs 21% of 2010 adult Medicaid, and 15% of 2010 Medicare national populations. Table 1 shows comparisons between A-Cl and P-Cl.

organization: Virginia Commonwealth University, Richmond, VA; Children's Hospital and Research Center, Oakland, Oakland, CA

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