Supportive care in transplantation: A patient-centered care model to better support kidney transplant candidates and recipients

Abstract

Kidney transplantation (KT), although the best treatment option for eligible patients, entails maintaining and adhering to a life-long treatment regimen of medications, lifestyle changes, self-care, and appointments. Many patients experience uncertain outcome trajectories increasing their vulnerability and symptom burden and generating complex care needs. Even when transplants are successful, for some patients the adjustment to life post-transplant can be challenging and psychological difficulties, economic challenges and social isolation have been reported. About 50% of patients lose their transplant within 10 years and must return to dialysis or pursue another transplant or conservative care. This paper documents the complicated journey patients undertake before and after KT and outlines some initiatives aimed at improving patient-centered care in transplantation. A more cohesive approach to care that borrows its philosophical approach from the established field of supportive oncology may improve patient experiences and outcomes. We propose the "supportive care in transplantation" care model to operationalize a patient-centered approach in transplantation. This model can build on other ongoing initiatives of other scholars and researchers and can help advance patient-centered care through the entire care continuum of kidney transplant recipients and candidates. Multi-dimensionality, multi-disciplinarity and evidence-based approaches are proposed as other key tenets of this care model. We conclude by proposing the potential advantages of this approach to patients and healthcare systems.

Key Words: Supportive care; Kidney transplantation; Death; Graft failure; Adverse outcomes; Kidney transplant recipients

Core Tip: Kidney transplant recipients and candidates face several uncertainties in their care journey and have several expressed unmet healthcare needs. We recommend a structured and comprehensive approach to transplant care across the entire continuum of a transplant patient’s journey similar to what has been developed in the field of oncology. The supportive care in transplantation model can operationalize patient-centered care and build on the efforts of other researchers in the field. We postulate that such a model would significantly improve care delivery and patients’ experiences and outcomes and potentially decrease healthcare utilization and cost.

INTRODUCTION

Patients with kidney failure benefit from (KT)[1,2], and experience improved survival rates when compared with dialysis[3-6]. KT studies, using validated instruments, have also consistently demonstrated that kidney transplant recipients (KTRs) experience better health-related quality of life and several improvements in other disease-specific domains when compared with dialysis[7]. In countries where dialysis is out of reach for many, the diagnosis of kidney failure would be futile without KT[8]. Thus, increasing KT has been a priority for the nephrology and transplant communities. This priority has been reflected in recent global trends: Of the 79 countries where data were available, the International Society of Nephrology’s Global Kidney Atlas reported that the prevalence of KTRs in 2023 was 279 per million population which represented an increase of 9.4% from the data published four years prior[8].

Despite this growth, KT can be a challenging journey for many patients and it is sometimes regarded as a ‘cure’, which does not conform with the reality that many patients experience[9-13]. KTRs must maintain a life-long treatment regimen of medications, lifestyle changes, self-care and medical appointments[14-17]. As poignantly stated by a young female transplant recipient, “I thought everything would change once I got my kidney. I thought I would be healthy again” but after experiencing multiple side effects of immunosuppressive medications and graft loss, she stated, “I am just a different kind of patient now”[18]. Indeed, a significant proportion of patients experience graft failure and return to dialysis; it is estimated that over 50% return to dialysis within 10 years of KT[19-23]. Patients are often not prepared for this outcome and report several psychosocial and physical ramifications of graft failure[24,25]. Overall, high symptom burden, adverse effects of immunosuppressants, risk of graft rejection or failure and mortality, contribute to complex needs, vulnerability and uncertainties for patients, increasing their care needs and treatment burden[26-30].

In this paper, we highlight the complex journey that KTRs and candidates undertake that can generate varied outcome trajectories and complex healthcare needs. We highlight the need for a comprehensive patient-centered approach to care and conclude with a proposal for a “supportive care in transplantation” care model.

DEFINING THE PRACTICE GAPS ≥ THE KIDNEY TRANSPLANT JOURNEY

The journey of a kidney failure patient’s pursuit of transplantation is intricate and complex and patients have variable care needs in each phase (Table 1). Patients are at risk of health deterioration, psychosocial vulnerability and increased frailty that may change their clinical course, with the risk of death being present each step of the way (Figure 1).

Figure 1 The complex journey of kidney transplant candidates and recipients highlighting several stages of uncertainty and prospects of death and other adverse outcomes. CKD: Chronic kidney disease; ESRD: End-stage renal disease; LKD: Living kidney donor; PNF: Primary non-function.

Table 1 The challenging elements within different phases of a kidney transplant recipient’s journey.

Waitlisting to transplantation

Transplant eligibility/candidacy

Living donor candidacy, if available

Support and preparation for various outcomes

Death

Ineligibility

Health deterioration

Being re-activated after being inactivated

Symptom burden

Health maintenance

Vaccination and preventative care

Kidney transplantation

Support and preparation for various outcomes

Graft failure

Death

Rejection

Surgical complications

Medication management

Short and long-term medical complications

Short and long-term infectious complications

Risk of malignancy

Symptom burden

Health maintenance

Vaccination and preventative care

Isolation (no longer on dialysis)

Return to workforce

Graft failure

Support and preparation for various outcomes

Death

Re-listing and re-transplantation

Ineligibility

Psychosocial support (patient, caregiver, living donor)

Transition of care

Immunosuppression plan

Medical complications

Infectious complications

Risk of malignancy

Symptom burden

Health maintenance

Vaccination and preventative care

WAITLISTING TO TRANSPLANTATION

Patients with kidney failure undergo a prolonged evaluation to determine whether they are suitable candidates for a transplant and whether a potential living donor candidate would be cleared for donation. Those waitlisted for deceased donation face another period of uncertainty as a transplant is not guaranteed and changes in the medical, surgical, or psychosocial state of the candidate can lead to inactivation, death or ineligibility for a transplant[31,32]. For example, the United States Renal Data System reported that among waitlisted patients, 38.8% were inactivated from the waitlist in 2020[21]. For those waitlisted between 2015-2017 years, 3 years after waitlisting, 5.7% had died and 13.9% had been removed from the waitlist[21]. Data from Australia reveal similar trends and demonstrate that inactivation from the waitlist one time had reduced access to deceased donor KT by about 30% and a 12-fold increase in the risk of death[32]. High prevalence of suboptimal health indicators, such as frailty, have been described and likely contribute to excess mortality[33-35].

KT

After KT, patients need to learn how to integrate medication and lifestyle changes into daily life routines[36-39]. Many are unprepared for the considerable time, effort and cost involved in adhering to their immunosuppressive medications[40]. Also, although the goal is for the patient to receive a transplant and return to an improved state of health, this does not translate into a straightforward and predictable trajectory for all recipients. A small proportion experience primary-nonfunction and return to dialysis immediately[41]. For others, the experience contains other uncertain trajectories, including suboptimal graft function, symptom burden, adverse effects of immunosuppressive medications, and the possibility of rejection. Other possibilities include surgical complications[42,43], increased risks of infections and malignancy[44,45], and cardiovascular complications[46,47], which may contribute to graft failure. In a qualitative study of 27 KTRs, themes of treatment burden were identified[14]. This included the work patients must undertake to care for their health, for example attending medical appointments and taking medications, with accompanying challenges or stressors that exacerbate the perceived burden[14]. In addition, KTRs report being unprepared for these different trajectories[48,49].

Even when transplants are successful, the adjustment to life post-transplant can be challenging and adaptation can be accompanied by negative emotions like guilt, sadness and anger[50,51]. A systematic review identified 23 studies where KTRs described psychological difficulties, including anxiety or depression in response to uncertainty about the future as well social difficulties due to minimizing contact with others for infection risk reasons and economic challenges due to the costs of medications[52].

GRAFT FAILURE

Despite several advances in diagnostics and therapeutics, 2%-5% of patients experience graft failure annually and it is becoming a leading cause of patients needing dialysis[21]. Management of patients with graft failure is complex and costly and outcomes are worse than in transplant naïve patients with kidney failure[26-30]. In a recent prospective cohort study of 16 Canadian centres, where 269 KTRs were enrolled within 21 days of graft failure, the unadjusted death rate was 7.51 per 100 patient-years and the overall hospitalization rate was 93.7 per 100 patient-years[53]. Uncertainties regarding the medical and surgical care of these patients may contribute to poor outcomes[54-58], as may practices with respect to immunosuppression management[53,59,60]. Graft failure can have medical and psychological consequences across several life domains and was the subject of a recent controversies conference from a leading global organization[24]. Patients with graft failure are faced with the need to return to dialysis, uncertain prospects of re-transplantation, and possibly end-of-life decisions.

DEATH

There is minimal understanding of the needs of preparing and supporting KTRs for potential outcome of death even though it is an outcome experienced by many along the transplant journey (Figure 1). Care teams may themselves lack the necessary expertise or resources to support patients and report difficulties in engaging in these conversations[61]. Integration of palliative and supportive care is needed as robust data from the oncology and non-cancer literature suggest that early palliative care leads to longer survival, lower symptom burden, improved quality of life and improved patient understanding of prognosis[62-64]. Also, in patients dying from non-cancer illness related to chronic organ failure, a study from Canada demonstrated that palliative care was associated with significantly lower healthcare use[65]. Yet, palliative care access among solid organ transplant recipients with a terminal diagnosis is much lower than those with a cancer diagnosis and referral to palliative care usually occurs much later in their disease trajectory[66].

STRATEGIES TO ADDRESS THE PRACTICE GAPS ≥ ADVANCING PATIENT-CENTERED CARE

Given the challenges described above, it is apparent that KTRs require more support and preparation for various outcomes than is currently provided. The centrality of the patient to all initiatives has been highlighted[67], and improving patient-centered care in transplantation has gained momentum[68-72]. Patient-centred care is an approach rooted in a deep respect for patients as unique individuals and entails being responsive to patient and families’ needs, beliefs and preferences[73-75]. It puts patients at the forefront of their health and care by engaging them in evidence-informed shared decision-making and supporting a partnership between individuals, families, and health care services professionals[76-78]. Significant attention has recently been devoted to operationalizing patient-centered care and devising pathways from targeted patient-centered care efforts to enhanced patient outcomes, and transplant care is no exception[79-83]. We elaborate on some initiatives that are aiming to better describe care gaps and understand care needs that can help advance patient-centered care in transplantation.

THE STANDARDIZED OUTCOMES IN NEPHROLOGY INITIATIVE

The standardized outcomes in nephrology-transplantation initiative developed a core set of outcome domains for trials in transplantation[84,85]. Six were identified as critically important to all stakeholders: Graft health, mortality, cardiovascular disease, infection, cancer, and patient-reported outcomes. For the latter, life participation and the ability to work and participate in meaningful activities were identified as relevant ways to capture the impact of symptoms and complications. More recently, a psychometric evaluation of the standardized outcomes in nephrology life participation instrument in KTRs is currently underway[86].

THE KIDNEY DISEASE–IMPROVING GLOBAL OUTCOMES INITIATIVE

A 2023 kidney disease–improving global outcomes controversies conference identified a broad set of needs in transplantation and graft failure, such as clarifying the definition of graft failure, developing prognostication models, and care guidelines for immunosuppression, transitions to dialysis and re-listing for re-transplantation[24]. The recommendations underscored obtaining patient perspectives and the centrality of the patient to management decisions as essential. We undertook a systematic literature review to synthesize existing evidence exploring the perspectives of KTRs with graft failure[25]. The key finding was that patients experienced graft failure as a turbulent and disruptive event and care transitions and healthcare approaches were often inconsistent and misaligned with patients’ self-identified needs and expectations; psychosocial support was a key care gap. Further studies to obtain and improve their perspective are underway.

OTHER INITIATIVES

A transplant-specific measure of treatment burden that can improve patient-centered care is being proposed as an exploratory endpoint[14]. Other studies have examined interventions toward self-management, particularly in the young adult cohorts[87]. Self-management is defined as “the tasks that individuals must undertake to live with one or more chronic conditions”[88]. Overall, however, self-management interventions tend to focus on the medical challenges and not on the emotional and social challenges of KTRs[36,38]. Two nurse-led self-management interventions have shown promising results as KTRs became aware of the challenges they faced and the progress they made during the intervention[36,87].

PATIENT HEALTHCARE NEEDS

Drawing upon these initiatives, we have identified five expressed healthcare needs of KTRs that are largely unmet in clinical care (See Figure 2). Advancing patient-centered care will entail addressing these unmet needs and identifying other emerging and unexpressed needs. Healthcare needs have been defined in the quality of life literature as “what patients desire to receive from healthcare services to improve overall health”[89]. Unmet needs are those that are not optimally met either due to unexpressed demand or expressed demand that is sub-optimally met[90].

Figure 2 Expressed and largely unmet healthcare needs of kidney transplant recipients as identified by ongoing initiatives of the transplant community to advance patient-centered care in kidney transplantation.

OPERATIONALIZING PATIENT-CENTERED CARE ≥ SUPPORTIVE CARE IN TRANSPLANTATION

While the above-mentioned initiatives are a significant achievement in advancing a patient-centered approach in transplantation, how to operationalize this approach is currently limited or isolated to one phase or one outcome trajectory. Thus, we propose an integrated framework which we call “supportive care in transplantation” that builds on the philosophical foundations developed in the oncology literature.

BACKGROUND

Supportive care in oncology or supportive oncology was a movement that gained momentum in the late 20^th century, as the focus on improving a patient’s quality of life and managing symptoms and side effects of cancers and their therapies gained importance[91]. It has been defined as “care which helps the individual and his/her family deal with the experience of cancer”[92,93] including coping with the disease and treatment[94]. It involves a coordinated, person-centric, holistic approach to patient care. In oncology, supportive care is now an established paradigm, supported by the Multinational Association for Supportive Care in Cancer[95]. Founded in 1990, this is an international, interdisciplinary organization dedicated to the practice, education, and research of supportive care in cancer[96].

While initially focusing on palliative care that emphasized pain management, psychological well-being, and end-of-life care, it now encompasses strategies that include the management of physical and psychological symptoms and improving the quality of rehabilitation, secondary cancer prevention, and survivorship[92]. The concept breaks from an older model of oncology structured around two opposing poles: Curative treatment and life-prolonging therapies on the one end and end-of-life on the other[97]. It acknowledges that the contemporary cancer experience is more of a continuum and a chronic condition where patients have ongoing needs for the prevention and management of symptoms. It further recognizes that meeting those ongoing needs requires a multidisciplinary group of health professionals to offer a comprehensive approach to care that is configured around addressing physical symptoms as well as the need for psychological and functional support[94].

SUPPORTIVE CARE MODEL IN TRANSPLANTATION

We propose a similar approach to care in the field of KT. This model can help advance patient-centered care in transplantation, support KTRs through uncertain trajectories (Figure 1), address the previously identified unmet care needs (Figure 2), help conceptualize the aspects of support KTRs might require and create opportunities to generate evidence that can then inform clinical practice. We present some of our preliminary work in developing this care model and highlight that ongoing work in our research group will further illuminate its elements, framework and implementation.

KEY TENETS IN TRANSPLANTATION

Supportive care has been identified as a core component of integrated kidney care in the general nephrology literature[98]; however a structured and comprehensive care model for how to deliver it is currently lacking. The oncologic literature highlights that the ideal model of supportive oncology does not exist yet[99]. Concerns related to supportive care being a patchwork of different medical specialties have been raised as well[100]. The European Society of Medical Oncology has identified some key features of supportive care[94]. We draw on these, as well as the literature on patient-centered care[70-73,101] to propose four key tenets of supportive care in transplantation (Figure 3).

Figure 3 Key tenets of a supportive care in transplantation model.

Patient-centered

Patient-centered care is one where patients are partners with their health care providers and “an individual’s specific health needs and desired health outcomes are the driving force behind all health care decisions and quality measurements”[102]. The Picker Principles of patient-centered care comprehensively capture eight aspects of care which we contend are well suited to inform the first tenet of supportive care in transplantation model[70-73]. This model was developed by researchers from Harvard Medical School on behalf of the Picker Institute (https: //picker.org/) and the Commonwealth Fund and has been adopted by the National Academy of Medicine for achieving patient-centeredness, a key aim to transform the United States healthcare system[103]. The eight principles are: (1) Respect for patients' values, preferences and expressed needs; (2) Coordination and integration of care; (3) Information and education; (4) Physical comfort; (5) Emotional support and alleviation of fear and anxiety; (6) Involvement of family and friends; (7) Continuity and transition; and (8) Access to care. We believe that the incorporation of these principles as the first tenet of supportive care in transplantation can help to counter several problems identified in supportive oncology, such as challenges with coordination, communication and continuity of care[104].

Multidimensional and multidisciplinary

According to Krishnasamy et al[105] and Fitch et al[106] seminal text in supportive oncology, there are several domains of supportive care: Informational, emotional, practical, physical, psychological, social and spiritual. A multidimensional approach can support the formulation of an individual's health problem from a biological, psychological or social perspective[107]. Multidisciplinary care can bring together healthcare professionals from different fields to better inform a patient’s diagnostic and therapeutic plan[108]. These approaches can improve patient care and maximize the quality of patient outcomes[109]. The paradigm of supportive care also conceptualizes the role of the oncologist as not only delivering “the best quality anticancer treatment” but also taking into account “the impact of the disease and treatment on each patient’s life”[94]. Additionally, with this approach, the oncologist includes and collaborates with other healthcare providers in order to address the full spectrum of patients’ needs[104]. We highlight generative components and strategies for different levels of the health system and the benefit of inter- and multi-disciplinary approaches (Figure 4). While transplant teams may continue to play a central role, this care model calls for a coordinated and integrated approach that involves a range of other healthcare professions and disciplines, such as palliative care, primary care, social work, rehabilitation, nutritional support, psychiatric services, psychological and spiritual counselling and integrative medicine.

Figure 4 Components and strategies needed at different levels of a health system and the benefit of inter- and multi-disciplinary approaches.

Provided across the entire care continuum

As highlighted above, the journey of a KTRs is complex and does not end with the transplant surgery. Patients require significant support to manage their care especially when they experience uncertain trajectories, such as infections and glomerulonephritis recurrence or as they experience graft failure and return to dialysis. A third key tenet of supportive care is to provide care across the entire transplant journey. Of note, supportive care tends to be associated with palliative care[110]. Indeed, even in cancer care the term supportive care has been replaced by supportive oncology[104]. We highlight that the crux of supportive care is a person-centered approach that recognizes the “totality of experience”[106], and that palliative care is a part of supportive care in the KT context.

Evidence-based

Evidence-based practice is defined as the “conscientious and judicious use of current best evidence in conjunction with clinical expertise and patient values to guide health care decisions”[111]. While ideally generated from randomized controlled trials, this can be difficult to achieve in transplantation. Thus, other scientific methods such as descriptive and qualitative research, case reports, scientific principles, and expert opinion are also necessary to inform care; as the research accumulates the best available evidence will need to be incorporated[111,112]. However, we highlight that advancing supportive care in practice can lead to advances in evidence creation. For example, in oncology, chemotherapy-induced nausea and vomiting were recognized to be a major reason for the interruption or discontinuation of chemotherapy[104]. This recognition led to the development of new therapies and the development of evidence-based prescribing guidelines[104]. This achievement was such a major milestone in oncology that in 2014, the American Society for Clinical Oncology identified progress in antiemetics as one of the five best advances in modern oncology over the previous 50 years[113]. We propose that the holistic approach of supportive care in transplantation has potential to increase opportunities to pursue research, highlight priorities, and increase opportunities to make trials feasible. Thus, it can foster opportunities to create evidence and inform practice (Table 2).

Table 2 The postulated benefits of supportive care in transplantation care model.

For the patient and families

Improve quality of life

Decrease symptom burden

Facilitate self-management

Improve adherence

Decrease risk of graft loss

Decrease risk of mortality

Improve end-of-life care delivery

Among patients with graft failure

Facilitate transitions of care

Improve outcomes

Facilitate re-transplantation

Decrease caregiver burden

For public health and healthcare

Decrease healthcare utilization

Reduce emergency visits

Minimize need for hospitalizations

Increase patient return to workforce

Maximize organ utility

Social return on investment

Improve collaborations between care teams

For research progress

Identify research priorities

Create collaborative networks

Opportunities for patient partnerships

Improve feasibility of trials

POTENTIAL ADVANTAGES

Preventative, supportive, and early approaches are generally known to decrease healthcare costs and improve patient outcomes. While there have been few formal assessments of supportive oncology, there is growing evidence that interventions to manage the specific problems encountered within supportive care lead to improved symptom control and quality of life[104,114], as well as reduced emergency visits and hospital admissions[115-118]. For example, the integration of electronic patient-reported outcomes into routine oncology practice for symptom monitoring in patients with metastatic cancer was associated with increased survival compared with usual care[119]. In an ambulatory setting, unmet supportive care needs were associated with a 45% higher risk of emergency room visits and a 36% higher risk of hospitalizations[118]. In another study, a dedicated supportive care service led to a 3.2% decrease in unplanned hospital admissions, a 5% decrease in emergency room visits and a 2.2% decrease in costs related to hospitalizations[117]. In an economic analysis, a return on investment with a benefit-cost ratio of 1.4 was demonstrated[115]. Furthermore, there are potential survival benefits if, as a result of supportive care, better adherence to treatment regimens is achieved. Minimizing adverse effects enables maximum benefit from treatment. Better symptom management can lead to increased life and workforce participation, thus, proponents argue that supportive care also offers a social return on investment[104].

We propose that similar benefits can be observed in KTRs; supportive care in transplantation can improve quality of life, ability to work, and treatment adherence. Non-adherence is a major reason for graft loss, particularly among adolescent and young adult KTRs[120-124]. In addition, the care of KTRs is costly and in the United States, inflation-adjusted per-person per-year expenditures for medicare fee-for-service was $43913 in 2021[21]. This is variable and is dictated by the outcome trajectories as some patients with more complications and fewer supports likely access tertiary care or emergency services more than others. The coronavirus disease pandemic has also highlighted the disproportionate burden of healthcare utilization by transplant recipients and supportive care model can minimize utilization of tertiary services and decrease healthcare costs[21].

Lastly, a transplant is a gift to society, the patient and the healthcare system from the deceased donor or the living kidney donor. The ethical principle of utility dictates maximizing the expected net amount of overall good[125]. Prolonging the survival of the graft and the patient is key to this ethical principle. Thus, we believe that a social return on investment of this supportive model of care in KT will be worth the initial investment and costs (Table 2).

CONCLUSION

KTRs and candidates face several uncertainties in their care journey and have several expressed unmet healthcare needs. We recommend a structured and comprehensive approach to transplant care across the entire continuum of a transplant patient’s journey similar to what has been developed in the field of oncology. The supportive care in transplantation model can operationalize patient-centered care and build on the efforts of other researchers in the field. We postulate that such a model would significantly improve care delivery and patients’ experiences and outcomes and potentially decrease healthcare utilization and cost.