Life and expectations post-kidney transplant: a qualitative analysis of patient responses

Kidney transplantation has transformed the care of patients with end-stage renal disease (ESRD). Each year, approximately 17,600 kidney transplants are performed within the United States (US), and currently 193,000 patients live with a functioning graft [1]. If the transplant functions for at least 1 year, the median survival of the kidney, depending on the donor type, is between 12 and 16 years [2]. Transplants can provide dramatic improvements in quality of life and health status [3]. However, improved outcomes are not universal [4], and most patients are expected to eventually suffer graft loss [2].

Despite the large and growing population of kidney transplant recipients, there is a limited understanding of the subjective patient experience following transplantation. A handful of qualitative studies have reported recipient perspectives. These include Boaz and Morgan, who interviewed kidney transplant recipients to study the return to normalcy, and Orr et al. who used focus groups to understand quality of life [4, 5]. They found that recipients define a normal life in a variety of ways and reported common themes of fear, gratitude, and a medicalization of their lives. While these teams spoke with 26 and 25 patients respectively, a wider sample may be better able to capture nuances of the post-transplant experience. Howell et al. used focus-nominal groups to study trade-offs between outcomes associated with immunosuppression [6]. They found that patients would rather experience severe treatment-related adverse events than lose their grafts, thereby illuminating the importance of understanding and including the patient perspective in clinical decision-making. Other studies in this area have used closed-ended questions to study patient experiences. Some compared life before and after transplant [7‐9] and found that prior to transplant patients may overestimate gains in quality-of-life. One of the few studies that included prompts about the future was a follow-up of the Howell et al. qualitative analysis; they asked patients to rank post-transplant outcomes and found, supporting results from their earlier studies, that patients ranked graft loss worse than death [6, 10]. While there are reports on recipient perspectives from around the world (e.g., Europe [4, 5, 7]; Australia [6, 10]; Asia [11]; and Middle East [12]), there is little data on experiences and future expectations of recipients within the US. Experiences and interactions with healthcare systems may be strongly affected by the context of care, especially as it relates to cost and support systems.

This report is part of a larger study that seeks to understand the perspectives of kidney transplant recipients and their healthcare providers post-transplant. An earlier paper compared patient and provider responses to closed-ended survey questions from the same sample used in this analysis [13]. The objective of the current paper is to draw themes from open-ended responses about life changes, concerns about healthcare and future quality of life, and other reported post-transplant experiences.

The response rate to the full survey was 66%, and demographic characteristics were similar between those who consented and those who declined to participate. Participants in the survey were older, transplanted more recently, more likely to be male and have received a living unrelated donor transplant compared to the UM kidney transplant population that met eligibility for the study. A comparison of the demographic characteristics of participants who responded to the open-ended questions to those who did not is shown in Table 1. Participants who answered the open-ended questions versus those who did not were younger at the time of transplant (mean age 48.3 vs. 52.0, p = 0.05), were more likely to be female (37% vs. 23%, p = 0.05), and were transplanted more recently (median years since transplant 5.1 vs. 8.0, p = 0.02).

This analysis provides a broad view of the patient experience following kidney transplantation. Questions prompted recipients to consider how their lives had changed and their concerns about their healthcare and quality of life. Many themes emerged from the responses, including experiencing higher quality of life and better health since transplantation as well as concerns about future health, costs, and burdens of care. These themes echo and extend results from studies of kidney transplant recipients in other contexts [3‐6, 8, 10, 11].

Our results suggest that patients have disparate experiences post-transplant. When asked “How has your life changed since having a kidney transplant?”, the largest portion of patients reported improvements in quality of life and health, while several reported that there had been no change, and some said their lives had worsened. This is consistent with Orr et al. ([4] citing Orr A: “Patient attitudes to renal transplantation and quality of life following renal transplantation: an exploratory study,” unpublished)— who found that 15% of transplant patients experienced difficulties—and other studies that have reported improvements [3, 24]. Similarly, prior studies have reported different results for changes in energy level; some have seen increases [3, 8], and others have reported decreases [5, 11, 23]. Patient responses in this study lend credence to the finding that energy levels after kidney transplantation vary between recipients. Similarly, participants reported a variety of common comorbidities including diabetes, cancer, and heart disease [6], though these do not affect all patients.

In addition, while many patients expressed the desire for a normal life, patients may have different views on what a “normal life” is. Some recipients mentioned that they have returned to work. Others reported that they were better able to care for themselves and others, travel, and spend time with their families. While providers may consider returning to work an important metric for transplant success [23, 25‐27], the range of responses indicate that patients may define normalcy more broadly [5].

The effects of a kidney transplant are not limited to a patient’s physical health or lifestyle; it can also have substantial psychological benefits. Patients expressed feeling a heightened sense of purpose and gratitude to be alive. For many, this manifested itself in an increased sense of freedom. While Smith et al. did not find statistically significant differences in the amount patients traveled pre- vs. post-transplant [8], recipients can travel without having to make cumbersome dialysis arrangements to maintain their dialysis regimes while away from their customary dialysis facilities. The optimism may also be derived from how much better many patients feel. As their health improves, it is perhaps natural to foresee the trajectory of their lives improving as well.

However, some patients also expressed a psychological weight from changes post-transplant. A large portion reported concerns regarding the potential for graft failure. Past studies that have asked patients to rank possible transplant outcomes found that patients considered graft failure worse than death [6, 10] and that the risk of graft loss is a persistent fear [5]. Our study adds to past literature in that it expands on why graft failure is concerning. Patients reported stress related to the uncertainty about when the failure would occur and the implications for life afterwards. The anxiety about returning to dialysis may be due to both the physical toll and the potential burden on their support systems. Furthermore, some patients expressed an obligation to live a life of purpose because of the gift of the transplant; this echoes a prior study that reported some patients felt a duty to care for their kidney [4].

We see a resonance in many of the patient perspectives with other studies conducted with patients outside of the US [4‐6, 10, 11]. This lends support to the sense that the themes of quality of life and health post-transplant and views on graft failure and living a life of purpose may be experienced broadly.

In contrast, other prominent concerns included cost and insurance, which may be more important within the US context. These were among the strongest responses, perhaps because they threaten both quality of life and health. In particular, some of these concerns may relate to the US payment system for immunosuppressant medications. After a kidney transplant, Medicare pays for the immunosuppressant medications for the first 3 years but not after that time (unless the patient qualifies for Medicare via age or disability). Medications that are not covered by insurance can cost thousands of dollars out of pocket annually [28, 29]. Patients also expressed specific concerns about insurance. This may affect how patients evaluate the decision to return to work; e.g., patients may be unlikely to work part-time if it would lead to a loss of government benefits. In the time since the survey was conducted (2015), public policy in the US regarding healthcare funding and insurance availability for those with preexisting conditions has been volatile. This may further exacerbate feelings of insecurity related to costs.

Our study is among the few to use qualitative methods to study kidney transplant recipients within the US context and to examine expectations for the future. Much of the qualitative research about life after a kidney transplant has been conducted through focus groups and interviews, in contrast to in-person surveys. Our study sample was recruited during follow-up visits and included a broad range of patient demographics and times since transplant; it is possible that a wider range of patients participated than those who would have attended more time-intensive focus groups.

The study’s limitations should also be considered. In contrast to studies that use interviews and focus groups, the survey was not interactive. As such, we could not ask patients for clarification or for additional detail. We therefore must be particularly careful with interpretation and be aware of a negativity bias. The open-ended questions were asked at the end of the survey; responses may have been influenced by earlier survey questions or survey fatigue. Not all participants responded to the three open-ended questions; 87, 80, and 36% of the participants answered the questions, respectively. The study was conducted at a single center, and it should be noted that the exclusion criteria barred children and patients with non-renal or prior renal transplants from participation, so responses may not fully generalize to the full spectrum of kidney transplant recipients. Patient responses were collected in 2015 and may be less applicable in today’s context. Perspectives, particularly those related to insurance and the cost of post-transplant care, may also not be representative of patient concerns outside of the US. Finally, the counts presented in Table 2 should be viewed cautiously. A lack of response does not imply that the patient agreed or did not agree with a theme.

In this follow-on study, we use qualitative methods to analyze the perspectives of kidney transplant recipients about their current experiences and future concerns. Common themes in the responses included improvements in quality of life and health, as well as concerns about remaining healthy, future quality of life, and cost. Further study may be helpful to understand the effects of cost on patient care and experiences. The findings also suggest the need to study whether changes in education and practice could lessen the stress related to uncertainty in transplant outcomes. A better understanding of recipient perceptions based upon insights gained from qualitative studies of recipient experiences may lead to improvements in pre-transplant education and in post-transplant care.