Related haematopoietic progenitor cell donor care: the influence of current guidance, and pathways to improvement

Historically, relatively little regulation has been in place to safeguard the health and well-being of related HPC donors (RDs), and retrospective studies have suggested an increased incidence of adverse events in comparison to unrelated donors. Although in recent years, FACT-JACIE Standards have introduced specific requirements aiming to address this gap, accreditation is not mandatory in many countries, and the influence of such changes has never been evaluated. This thesis provides insight into current procedures for managing RDs in transplant centres internationally, examines the impact of regulatory guidance to date, and explores potential pathways to improvement. Studies in this thesis provide a detailed analysis of RD care pathways in the USA and Europe, and I am able to clearly demonstrate the potential for regulation to drive change in this field. Improvements are shown over time in aspects of care that have been addressed by regulatory standards, and management of RDs in accredited centres is shown to be more consistent with accepted best practice than that in nonaccredited centres. These studies also reveal heterogeneity in donor care at each stage of the pathway with the result that RDs who would be deemed suitable by some transplant centres would be deferred by others. In an effort to align care standards for RDs, I assessed the feasibility of alternative care pathways and showed considerable logistical and financial difficulties for care models where the entire RD pathway is managed outside the transplant centre setting. However I was able to establish a model of RD follow-up by an unrelated donor registry, which was evaluated through a successful pilot study. After I demonstrated enthusiasm for clear guidelines and medical criteria in related donor care, I led the development of national RD care guidelines and including an online tool for comprehensive RD medical suitability criteria