Quality Metrics and Health Care Utilization for Adult Patients with Sickle Cell Disease

Monica Ter-Minassian, Sophie Lanzkron, Alphonse Derus, Elizabeth Brown, Michael A. Horberg

Research output: Contribution to journalArticlepeer-review


Background: To date, there are no standardized, well-accepted, quality metrics that guide care for adults with sickle cell disease (SCD). The primary objective of this study was to evaluate the quality metrics that are in use at the Adult Sickle Cell Disease Program at Johns Hopkins Hospital (JHH) and the applicability of the metrics to Kaiser Permanente Mid-Atlantic States (KPMAS), an integrated healthcare system with a developing adult sickle cell disease program. Methods: We performed a retrospective cross-sectional study of 146 KPMAS and 308 JHH patients from January 1, 2014–December 31, 2015. Demographics, genotype and data on several key quality metrics (yearly screening labs, documented vaccinations and appropriate hydroxyurea prescriptions) were collected from electronic health records (EPIC Systems). We defined hydroxyurea adherence as having had at least 6 months of refills prescribed during the two years of study by either EHR or patient report. Results: Patients at KPMAS were older than those at JHH (median age 44 and 33 respectively) and less likely to have hemoglobin SS disease (29% and 66% respectively). Among KPMAS patients, 85% had documentation of any pneumococcal vaccination compared to 87% at JHH. 21 of 54 eligible patients at KPMAS and 95 of 165 eligible patients at JHH were prescribed hydroxyurea. At both institutions, 62% of patients were adherent to hydroxyurea. There were limitations to diagnosis coding and availability of vaccination and refill documentation. Conclusions: Interventions to improve preventative care adherence are needed to improve outcomes in both academic medical centers and integrated health systems.

Original languageEnglish (US)
Pages (from-to)54-61
Number of pages8
JournalJournal of the National Medical Association
Issue number1
StatePublished - Feb 2019


  • Healthcare utilization
  • Hydroxyurea
  • Quality metrics
  • Quality of care
  • Sickle cell disease
  • Vaccinations

ASJC Scopus subject areas

  • Medicine(all)

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