title: Current attitudes of parents and patients toward hematopoietic stem cell transplantation for sickle cell anemia.
abstract: BACKGROUND
  Allogeneic hematopoietic stem cell transplantation (HSCT) is the only available cure for sickle cell anemia (SCA). HSCT-associated risks are one of many barriers to its widespread use for SCA. The study objective was to assess parent and patient perceptions of HSCT in the era of more widespread knowledge about HSCT for SCA.
  
  
  METHODS
  We surveyed parents of children with SCA and adolescents with SCA using the standard reference gamble paradigm. Survey responses between Africans (A) and African Americans (AA) and between parents and adolescents were compared.
  
  
  RESULTS
  Seventy-two percent (64/89) of the respondents were willing to accept ≥ 5% risk of mortality, while 57% said they would accept a risk of ≥ 10% of graft versus host disease (GVHD). Twenty-two percent were unwilling to accept any risk of mortality or GVHD. Risk averseness did not differ between A or AA respondents. Fifty-six percent of respondents were willing to accept infertility post-HSCT.
  
  
  CONCLUSIONS
  These data suggest that the majority of parents and adolescents are willing to accept the current risks associated with matched sibling HSCT for SCA. However, there continue to be significant numbers of parents and adolescents who are unwilling to accept any risk of HSCT-associated mortality or GVHD.
authors: Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, DC, 20010.|Department of Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, DC.
authors: Emily Riehm
authors: ER
authors: Meier
authors: Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, DC, 20010.
authors: Jacqueline V
authors: JV
authors: Dioguardi
authors: Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, DC, 20010.
authors: Naynesh
authors: N
authors: Kamani
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000150:complications / Q000523:psychology* / Q000628:therapy*; D001294:Attitude to Health; D002648:Child; D005260:Female; D005500:Follow-Up Studies; D006086:Graft vs Host Disease / Q000209:etiology*; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007246:Infertility / Q000209:etiology*; D008297:Male; D010290:Parents / Q000523:psychology*; D011379:Prognosis; D014184:Transplantation, Homologous
keywords: graft versus host disease; hematopoietic stem cell transplant; infertility; mortality; sickle cell anemia