Abstract
A challenge for registries of unrelated hematopoietic stem cell (HSC) donors is to recruit and retain sufficient donors for patients needing transplants. Many registered HSC donors opt-out when called as a potential match for a patient. Anecdotal evidence suggests that motives for joining a registry may be linked to the donation decision. The primary goals of this investigation were to describe the range of motives for joining a registry and to examine donor availability by motive type. A diverse sample of 357 potential HSC donors from the Anthony Nolan registry in the UK was asked about their motives for joining and their decision to continue or opt-out after matching a patient was recorded. Motives for joining (N = 557) were first coded and categorized into 17 specific motive types and then arranged along a spectrum from internal to external. Internal values-based motives were most prevalent and availability was highest among potential donors expressing these motives (92%) and lowest among those expressing external motives (pressure, incentives; 0%). Although further research is needed to confirm these findings, they suggest that registries should assess donors’ motives for joining at recruitment in order to conduct follow-up to ensure commitment among those potential members expressing external motives.
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Acknowledgements
This project was supported by funds from Anthony Nolan.
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All authors participated in the design of the research, selection of the analytic strategy, and manuscript preparation. B.S., C.A., A.B., and A.O. facilitated sampling and participant recruitment and data management at Anthony Nolan. J.B. and G.P. collected and managed data at the University of Pittsburgh. A.H., G.S., J.B., and G.P. analyzed the data. All authors interpreted data and reviewed and approved the final manuscript.
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La Casta, A.H., Shaw, B.E., Anthias, C. et al. Motives for joining an unrelated HSC donor registry: description, categorization, and association with donor availability. Bone Marrow Transplant 54, 425–431 (2019). https://doi.org/10.1038/s41409-018-0278-2
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DOI: https://doi.org/10.1038/s41409-018-0278-2