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.
Procedure: 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.
Keywords: graft versus host disease; hematopoietic stem cell transplant; infertility; mortality; sickle cell anemia.
© 2015 Wiley Periodicals, Inc.