Unmet Educational and Psychosocial Support Needs After Graft Loss: A Call for Clarity and Compassion

One-kidney-for-life for end-stage kidney failure patients remains an elusive goal. Therefore, depending on age, many individuals with end-stage kidney failure will go through 1 or multiple treatment cycles of dialysis and/or transplantation. For those who experience loss of a transplanted graft, treatment options include conservative kidney management, return to or initiation of dialysis, (preemptive) listing for deceased donor transplantation, and living donor transplantation. In the United States, the preemptive relisting or retransplantation rate is 15% after graft loss and rates vary greatly between centers.1 The loss of a transplanted graft can have a large impact on all areas of life, including physical, social, emotional, and economic well-being. For physical health, return to dialysis is associated with an increase in morbidity and mortality as well as a reduction in quality of life.2 Recipients who have undergone a previous transplant may be viewed as “experienced patients”; however, their knowledge may be outdated. One treatment option to be considered is living donor kidney transplantation.3 Emotionally, both graft loss and searching for a living donor can be taxing for the patient as well as their loved ones. From an economic perspective, graft loss may mean having to work less or going on sick leave, both of which are likely to have financial consequences. Despite this being a crucial and uncertain transition moment for individuals with end-stage kidney disease, their experiences and care needs are a relatively understudied topic. This is underscored in a systematic review of patients’ perspectives and experiences of graft loss, which found only 6 studies including a total of 31 patients.4 In this review, 3 phases in the transition through graft failure were described: shattering of lifestyle and plans associated with a successful transplant, physical and psychological turbulence, and realignment by learning adaptive strategies to move forward. However, none of these studies focused specifically on care needs, and there is little known on whether recipients’ needs are being met. The multicenter, qualitative study by Slominska et al5 addressed this important topic of unmet care needs among kidney transplant recipients who experience graft loss. Recipients were recruited from 9 transplant centers covering a large geographic area in Canada. Consequently, findings are less likely to be a result of policy or an approach in 1 specific center and are generalizable to other similar transplant settings. The methodology used for analysis was robust, using 2 independent researchers and multiple iterations of coding to limit researcher bias. Trustworthiness could have been enhanced by respondent validation (or member checking), which is acknowledged by the authors themselves. Findings described 6 care needs themes: setting expectations, communication needs, psychosocial support, transitioning to dialysis, pursuit of retransplantation, and lessons learned. Unmet education needs and specialized psychological support needs are evident throughout the findings. Educational needs include setting realistic expectations of graft longevity and transplant as a treatment rather than a cure, information provision and explanation of the process of graft failure so as to be prepared and to understand when it occurs, clarity on the timeline of graft loss, and timely and transparent information provision on all potential treatment options. The study highlights that patients felt a “lack of options,” focusing on dialysis or conservative treatment, despite retransplantation being “the preferred choice.” As the choice of subsequent kidney replacement treatment has consequences for immunosuppressive management, timely education and shared decision-making are crucial.6 To meet the educational needs of this target group, an educational package tailored toward this specific situation of graft loss may be required. For example, home-based education programs could easily be adapted for this purpose.7 Support needs included empathy for how devastating the news of graft loss can be, empathy for potential anxiety on return to dialysis, processing of emotions to help limit delay of treatment, taking time for counseling, posttransplant attention to mental health (in contrast to the emphasis on pretransplant psychosocial evaluation), and timely support from various sources including social workers, peers, and specialized transplant psychologists. Moreover, mutual trust and respect were essential conditions for effective patient-physician collaboration. Experiences with shared decision-making and the need for self-advocacy varied across the sample. These findings emphasize that graft loss is emotionally impactful. Many of the emotions reported, such as denial, fear, and sadness, parallel those of the grieving process. Indeed, a previous qualitative study of recipients after graft loss supports this parallel.8 Grieving is the process of adapting to the loss of something or someone of importance. In some cases, this natural process will take its course, and in others, recipients may need additional support. Recognition, acknowledgment, and appropriate support for this process may help meet recipient’s care needs. Familiarity with the grieving process and grief support skills are likely to be beneficial for professionals in a supporting role.9 One area for further consideration for future research is the support needs of recipients from minority groups and access to retransplantation. Disparities in access to living donor transplantation persist, which also translates into differences in graft survival between ethnic groups.10 In the study of Slominska et al,5 the sample was largely White and the aim was not to elucidate care needs among specific ethnic groups. Therefore, this represents an area for further exploration to better understand unmet care needs and remove barriers to accessing retransplantation. As all clinicians working in the transplant setting will treat patients with graft loss, the themes found here are essential knowledge to help professionals counsel their patients. The needs of recipients who experience graft loss are multifaceted, and it is clear that close collaboration within a multidisciplinary team is required to meet recipients’ needs. The findings highlight the need for specialized and experienced transplant psychologists who are familiar with the transplant process from start to finish. Developing and testing psychosocial interventions and clinical care strategies for the transplant setting has been highlighted as important for future research,11 which is further underscored by the findings of Slominska et al.5