title: Race and ethnicity in decisions about unrelated hematopoietic stem cell donation.
abstract: Large international registries of potential unrelated hematopoietic stem cell (HSC) donors, including the National Marrow Donor program (NMDP), continue to face difficulties finding matched donors for racial/ethnic minorities. One reason, in addition to the generally less common HLA types among minority patients, is the much higher registry attrition rate of racial/ethnic minorities compared with whites. Reasons for the higher attrition among minority potential donors remain unexplained. The goal of our cross-sectional telephone interview study was to generate a diverse sample of potential HSC donors who have preliminarily matched a patient and to identify factors associated with race/ethnicity and with the decision to continue toward potential donation or to opt out of the registry. Multiple culturally related, psychosocial, and donation-related factors were associated both with race/ethnic group membership and attrition from the registry. The most consistent factor associated with opting out of the registry across all race/ethnic groups was ambivalence about donation: doubts and worries, feeling unsure about donation, wishing someone else would donate in one's place. Our findings suggest that universal donor recruitment and management approaches based on reducing donation-related ambivalence and tailored messages and strategies for each of the individual race/ethnic groups are important.
authors.affiliation: Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, PA, USA. switzerge@upmc.edu
authors.forename: Galen E
authors.initials: GE
authors.lastname: Switzer
authors.forename: Jessica G
authors.initials: JG
authors.lastname: Bruce
authors.forename: Larissa
authors.initials: L
authors.lastname: Myaskovsky
authors.forename: Andrea
authors.initials: A
authors.lastname: DiMartini
authors.forename: Diana
authors.initials: D
authors.lastname: Shellmer
authors.forename: Dennis L
authors.initials: DL
authors.lastname: Confer
authors.forename: Linda K
authors.initials: LK
authors.lastname: Abress
authors.forename: Roberta J
authors.initials: RJ
authors.lastname: King
authors.forename: Allyson G
authors.initials: AG
authors.lastname: Harnaha
authors.forename: Sibylle
authors.initials: S
authors.lastname: Ohngemach
authors.forename: Mary Amanda
authors.initials: MA
authors.lastname: Dew
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology; D003430:Cross-Sectional Studies; D003863:Depression / Q000523:psychology; D005006:Ethnicity / Q000235:genetics* / Q000523:psychology; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000208:ethnology* / Q000523:psychology; D006412:Hematopoietic Stem Cells; D006650:Histocompatibility Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D008913:Minority Groups / Q000523:psychology / Q000706:statistics & numerical data*; D012042:Registries / Q000706:statistics & numerical data; D014019:Tissue Donors / Q000523:psychology / Q000706:statistics & numerical data*