Background: 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 A dult S ickle C ell Q uality of Life Me asurement 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.

Conclusions: In SHIP-HU, overall QOC was rated the same as the 2010 adult Medicaid norms and slightly worse than the 2010 Medicare norms. ED visit satisfaction was worse than ambulatory visit satisfaction. Compared to care in adult settings, care in pediatric settings achieved higher rates of HU use, visits were rated as more satisfactory, and care was rated higher with regard to time spent with the ambulatory provider and a sense of real caring from ED doctors and nurses.

^Highest category=4 or more.


Lottenberg: Pfizer: Consultancy.

Author notes


Asterisk with author names denotes non-ASH members.

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