title: Hydroxyurea therapy for children with sickle cell disease: describing how caregivers make this decision.
abstract: BACKGROUND
  Hydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it is offered. This study explores what impacts this decision.
  
  
  RESULTS
  Caregivers of children with clinically severe SCD whose children were offered HU previously were interviewed. We used a qualitative analytical approach to analyze their telephone interview transcripts. Caregivers who chose HU (n = 9) reported their children had severe SCD, sought detailed information about HU, and accepted HU as a preventative therapy. In contrast, caregivers who did not choose HU (n = 10) did not perceive their children as having severe SCD and did not question their child's provider about HU.
  
  
  CONCLUSIONS
  This study identifies specific areas that providers should address to when they discuss HU with families so that they can make informed decisions. Our study also uncovered factors that are important to consider when designing future interventions to improve hydroxyurea acceptance and when developing decision-aid tools to assist caregivers of children with SCD who are considering disease modifying therapies.
authors: Division of Hematology-Oncology, Nationwide Children's Hospital, The Ohio State University, 700 Children's Drive Columbus, Columbus, OH, 43205, USA. susan.creary@nationwidechildrens.org.
authors: Susan
authors: S
authors: Creary
authors: Department of Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA. Susan.Zickmund@va.gov.
authors: Susan
authors: S
authors: Zickmund
authors: Division of Hematology/Oncology/BMT, Emory University School of Medicine, Atlanta, GA, 30322, USA. Diana.Ross@emory.edu.
authors: Diana
authors: D
authors: Ross
authors: Division of Hematology/Oncology/BMT, Emory University School of Medicine, Atlanta, GA, 30322, USA. Lakshmanan.Krishnamurti@choa.org.
authors: Lakshmanan
authors: L
authors: Krishnamurti
authors: Division of General Academic Pediatrics, Children's Hospital of Pittsburgh, University of Pittsburgh School of Medicine, Pittsburgh, USA. bogendl@upmc.edu.
authors: Debra L
authors: DL
authors: Bogen
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000188:drug therapy* / Q000451:nursing / Q000503:physiopathology; D000986:Antisickling Agents / Q000627:therapeutic use*; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D006801:Humans; D006918:Hydroxyurea / Q000627:therapeutic use*; D008297:Male
chemical_list: D000986:Antisickling Agents; D006918:Hydroxyurea