title: Quality-of-care indicators for children with sickle cell disease.
abstract: OBJECTIVE
  To develop a set of quality-of-care indicators for the management of children with sickle cell disease (SCD) who are cared for in a variety of settings by addressing the broad spectrum of complications relevant to their illness.
  
  
  METHODS
  We used the Rand/University of California Los Angeles appropriateness method, a modified Delphi method, to develop the indicators. The process included a comprehensive literature review with ratings of the evidence and 2 rounds of anonymous ratings by an expert panel (nominated by leaders of various US academic societies and the National Heart, Lung, and Blood Institute). The panelists met face-to-face to discuss each indicator in between the 2 rounds.
  
  
  RESULTS
  The panel recommended 41 indicators that cover 18 topics; 17 indicators described routine health care maintenance, 15 described acute or subacute care, and 9 described chronic care. The panel identified 8 indicators most likely to have a large positive effect on improving quality of life and/or health outcomes for children with SCD, which covered 6 topics: timely assessment and treatment of pain and fever; comprehensive planning; penicillin prophylaxis; transfusion; and the transition to adult care.
  
  
  CONCLUSIONS
  Children with SCD are at risk for serious morbidities and early mortality, yet efforts to assess and improve the quality of their care have been limited compared with other chronic childhood conditions. This set of 41 indicators can be used to assess quality of care and provide a starting point for quality-improvement efforts.
authors.affiliation: Department of Pediatrics, Boston University School of Medicine, Boston, Massachusetts, USA. jason.wang@bmc.org
authors.forename: C Jason
authors.initials: CJ
authors.lastname: Wang
authors.forename: Patricia L
authors.initials: PL
authors.lastname: Kavanagh
authors.forename: Alison A
authors.initials: AA
authors.lastname: Little
authors.forename: Jaime Bruce
authors.initials: JB
authors.lastname: Holliman
authors.forename: Philippa G
authors.initials: PG
authors.lastname: Sprinz
mesh_terms: D000755:Anemia, Sickle Cell / Q000628:therapy*; D002648:Child; D003697:Delphi Technique; D006801:Humans; D010043:Outcome and Process Assessment, Health Care; D019984:Quality Indicators, Health Care / Q000592:standards*; D011788:Quality of Life