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Current attitudes of parents and patients toward hematopoietic stem cell transplantation for sickle cell anemia
Author(s) -
Meier Emily Riehm,
Dioguardi Jacqueline V.,
Kamani Naynesh
Publication year - 2015
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.25446
Subject(s) - medicine , hematopoietic stem cell transplantation , disease , sibling , savior sibling , blood cancer , transplantation , anemia , sickle cell anemia , pediatrics , cancer , intensive care medicine , psychology , developmental psychology
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. Pediatr Blood Cancer 2015;62:1277–1284. © 2015 Wiley Periodicals, Inc.