title: Setting the agenda for quality improvement in pediatric sickle cell disease.
abstract: OBJECTIVE
  Despite recent scientific advances, children with sickle cell disease (SCD) continue to experience high mortality and significant morbidity, in part due to variations in the care provided. We sought to identify and compare drivers for quality improvement among clinical staff and parents of children with SCD.
  
  
  METHODS
  We interviewed clinical staff across care settings in an urban teaching hospital to elicit their perspectives on improving care for children with SCD. Concurrently, we invited parents of children with SCD to participate in focus groups to identify their needs. Findings are reported according to Consolidated Criteria for Reporting Qualitative Research guidelines.
  
  
  RESULTS
  We conducted 29 interviews with clinical staff and 4 focus groups with parents. Both groups identified the need for effective communication of relevant patient information across disciplines as a key area for improvement. Clinical staff cited standardization of care delivery as a top priority through increased accessibility of pertinent clinical information, enhanced pain assessment and management, and improved availability of clinical decision-making tools. Parents listed the need for increased community awareness about SCD, including school and day care staff, enhanced parental education and peer support, and self-management skills for their children as opportunities to improve pediatric SCD care.
  
  
  CONCLUSIONS
  Identifying drivers for quality improvement is a critical first step in transforming the care provided to children with SCD. Using a systematic approach that includes eliciting the perspectives of both clinicians and parents may significantly enhance the development of a patient-centered quality improvement agenda.
authors.affiliation: Robert Wood Johnson Clinical Scholars Program, University of Pennsylvania, Philadelphia, USA.
authors.forename: Chén C
authors.initials: CC
authors.lastname: Kenyon
authors.forename: Patricia L
authors.initials: PL
authors.lastname: Kavanagh
authors.forename: Lauren G
authors.initials: LG
authors.lastname: Fiechtner
authors.forename: Theodora E
authors.initials: TE
authors.lastname: Textor
authors.forename: C Jason
authors.initials: CJ
authors.lastname: Wang
mesh_terms: D000755:Anemia, Sickle Cell / Q000628:therapy*; D002648:Child; D005260:Female; D017144:Focus Groups; D006786:Hospitals, Urban; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010372:Pediatrics / Q000592:standards*; D010818:Practice Patterns, Physicians' / Q000592:standards*; D058996:Quality Improvement