Adult related haematopoietic stem cell donor care: Views of Transplant Nurses
Introduction
Haematopoietic stem cell (HSC) transplantation provides the only possible hope of cure for many otherwise incurable malignancies. The outcomes of HSC transplantation are strongly affected by the degree of matching between the donor and transplant recipient. Donor-recipient matching involves comparing tissue types, known as human leukocyte antigen (HLA) loci that distinguish ‘self’ from ‘non-self’. A poorly HLA-matched donor-recipient transplant can lead to graft-versus-host-disease (GVHD), leading to increased morbidity and mortality (ABMTRR, 2016; Petersdorf, 2007; Petersdorf et al., 2001; Yang et al., 2018).
Given these issues, every effort is made to find the best possible HLA-matched donor. HLA types are inherited so HLA-identical siblings are preferred donor candidates since they have the greatest chance (25%) of being HLA-matched with the recipient (Petersdorf, 2007). For those without an identical HLA-matched sibling donor, HLA-haploidentical (half matched)-related donors are now typically chosen in favour of HLA-matched unrelated donors because of better GVHD control and relapse-free survival (Kanakry et al., 2016; McCurdy et al., 2017; Solh et al., 2016). Inclusion of HLA-haploidentical related donors extends the pool of donors to include parents and children.
Coinciding with the increasing activity in related donor (RD) transplants is the recognition of the important role that Transplant Nurses (TNs) have in caring for RDs (Polomeni et al., 2016). TNs are key members of the multidisciplinary transplant team. As the first point of contact for RDs, TNs are vital in educating RDs and providing care throughout the decision-making, testing and donation process. Although there are guidelines for TNs to respond to unrelated donors (URDs), there are no similar guidelines to assist them in responding to RDs (Anthias et al., 2016; Anthias et al., 2015; Clare et al., 2010; O'Donnell et al., 2010). Compared with URDs, RDs face different and complex issues.
RDs have a dual role; as family members they experience the challenges of a life-threatening illness of their family member. As donors, their cells offer the best possibility of ensuring the recipient's survival. Negative experiences, such as feeling anxious, isolated, responsible and guilty for poor transplant outcomes have been described (Garcia et al., 2013; Pillay et al., 2012; Williams et al., 2003; Zomerdijk et al., 2018). In addition, negative psychosocial outcomes have been reported for donors of recipients who died (Chang et al., 2003; MacLeod et al., 2003). Presently, there is no long-term follow-up of RDs. This is in contrast to the follow-up of URDs, whom are offered follow-up by donor registries annually for a minimum of ten years after donation (Aprili et al., 2013). As such, in the absence of follow-up support, these issues are not addressed for RDs.
Further differences have been observed regarding the consent of RDs. To ensure confidentiality and prevent coercion, the evaluation of a URD is never conducted by a physician in the transplant team caring for the recipient (Hurley and Raffoux, 2004). In contrast, RDs are frequently managed by transplant physicians in the same team as that caring for the recipient. (Anthias et al., 2015, 2016). O'Donnell et al. (2010) found that in over 70% of centres in the United States, transplant physicians assessing a RD were involved in the care of the recipient. In 2010, 52% of the respondents of a European Group for Blood and Marrow Transplantation Nurses Group survey indicated that RDs in their centre were consented by transplant physicians caring for recipients (Clare et al., 2010). These findings suggest that a conflict of interest could arise in the management of related donors at a substantial number of transplant centres.
The lack of accepted guidelines presents substantial challenges for TNs in their assessment, judgment and decision-making when caring for RDs. Assuming current transplant trends continue; the increasing demand for RDs will increase the burden of RD care on transplant centres and individual TNs. To avoid potential problems and to help TNs achieve best practice in RD care management, it is important to gain a better understanding of the current RD care environment from the perspective of TNs and to identify areas for improvement in RD care in the future. The views of TNs are important as they are the ‘gatekeepers’ to family members donating and are integral in implementing changes in clinical practice to benefit RDs.
This study investigates (1) the perceptions of TNs about the psychosocial implications of donation by RDs; (2) the role of TNs in RD care; and (3) the adequacy of current RD practices in addressing RD needs from the perspective of TNs.
Section snippets
Design
This study was designed as a mixed-methods design. We adapted a quantitative and qualitative semi-structured interview guide designed by Polomeni et al. (2016), consisting of 28 open, closed and multiple-choice questions (see Appendix 1). The interview guide comprised three main sections. The first two sections comprised closed and multiple-choice questions and the latter comprised open-ended questions. Each TN participated in one interview. The lead author (NZ) conducted all interviews in
Demographic characteristics
All of the TNs working at the adult HSC transplant units (n = 7) gave consent to participate in our study. The TN participants consisted of six Bone Marrow Transplant Nurse Coordinators and one Apheresis Nurse Practitioner. All TNs were female and highly experienced with over half of the participants having over 10 years’ experience working in Haematology and a minimum of 1 year as a TN. Table 1 shows the demographic characteristics of TNs.
Organisation of related donor care
Table 2 reports TNs’ responses to questions about the
Discussion
Unlike URDs, RDs are actively involved in the transplant process and witness first-hand the changes in their relative's health. RDs are in a position of fulfilling both family member and donor roles, which may entail psychological vulnerability in that their role differs from that of URD groups. As a duty of care, transplant units must therefore be aware of and respond to the needs of RDs.
Conclusion
TNs describe concerns about the informational and psychosocial needs of RDs and the lack of clear referral pathways to access expert assistance. TNs highlight the need for improved RD information prior to obtaining consent, including details of the donation process which emphasizes the voluntary nature of donation and the right of the RD to refuse HLA typing or donation.
TNs are acutely aware of the complexity of balancing urgent treatment for the recipient against the needs of RDs and are well
Declaration of interest
None declared.
Funding statement
This work was supported by the Australian Government Research Training Program Scholarship; The Royal Brisbane & Women's Hospital Foundation Postgraduate Scholarship; and The Royal Brisbane & Women's Hospital Foundation Diamond Care Grant.
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