Chronic Kidney Disease and Psychosocial Determinants in Kidney Transplant Success

Patient reported outcome measures (PROMs) help determine the likelihood of hospitalization and mortality in patients with chronic kidney disease

With Hamid Rabb MD and Sarah Andrews MD


Patients with end-stage renal disease (ESRD) undergo a detailed evaluation prior to kidney transplant, which includes assessing their own thoughts and feelings about their disease and the transplant process. Endocrine Web discussed this process with Hamid Rabb MD, Medical Director of the Johns Hopkins Kidney Transplant Program. Dr. Rabb told us:

“The psychosocial evaluation is a major component of the kidney transplant evaluation process. Patient transplant candidacy is evaluated directly in clinic by members of the transplant team and then by a full transplant committee. Psychosocial factors are taken into consideration along with medical co-morbidities, social supports, and adherence to care.”

A common tool used with ESRD patients is the Kidney Disease Quality of Life Short Form (KDQoL-SF) which is a self-reporting instrument using general and disease-specific questions. Patients report on their own perceptions of their physical, mental, emotional, or social well-being and function, which are known as patient reported outcome measures (PROMs). PROMs are most often used in patients prior to transplantation, but they are also helpful in identifying vulnerable time points during disease progression, like starting dialysis. PROMs can help determine the likelihood of hospitalization and mortality in dialysis patients. It has been reported that these patients have lower PROM scores than chronic kidney disease (CKD). Patients not on dialysis and transplanted ESRD patients have the highest self-reported well-being scores. PROMs, then, can help tailor the healthcare plan for individual kidney patients as they transition.

A recent abstract presented by Swift et al. at the 2020 American Society of Nephology (ASN): Kidney Week conference suggested that improving quality of life in ESRD patients eligible for transplant may improve PROMs, like the scores on the KDQoL-SF.  In this study, surveys from over 900 hundred kidney eligible patients were complete at the beginning of the transplant evaluation process and then again after patients received transplant evaluation outcome notifications.  

The psychosocial state of chronic kidney disease patients

Sarah Andrews MD is a transplant psychiatrist in the Johns Hopkins Kidney Transplant Program. She told us, “Kidney disease is often asymptomatic in the early stages, and most people are diagnosed when kidney disease is already advanced. When patients with kidney disease undergo psychosocial evaluation, one of the aspects of the evaluation is to identify how patients view and manage stressful situations.”

A study by Kerklaan et al. provides a little insight into how these patients might be coping. They interviewed young adults with CKD who had been diagnosed as children. They found several psychosocial themes that were predominant in these adults. Specific to this population were fears of falling or being “left behind” as their peers gain independence and achieve life’s common milestones, reorienting their future plans to account for their disease, and fears about reaching their potential or being restricted in their opportunities. There were also themes which were present in all ages of CKD patients, including frustrations with daily restrictions, pursuing “normal” activities, and feelings of defeat and hopelessness. These feelings are amplified during trying times, such as the current COVID-19 pandemic. Patients with kidney disease also report a lower sense of mastery or life control possibly due to their stricter compliance to COVID-19 guidelines because of being a high-risk group.

The Swift et al. ASN abstract reports that these psychosocial states present in the pre-transplant patients have a direct effect on the transplant evaluation outcome. The authors encourage patients and their health care team to address such issues as depression and lack of mastery before initiating the transplant evaluation process. Dr. Andrews told us:

“If patients need to improve coping skills to better equip them for the stressors of transplant, we recommend that they engage in therapy with a focus on coping skills. Kidney disease, as with most chronic illnesses, is associated with a greater risk for depression and anxiety. Thus, it makes good sense to address these issues at the onset of the illness to improve the chances later on when the journey includes a kidney transplant.”

What is the risk of a low psychosocial profile in a patient with chronic kidney disease?

About 16% of patients on the waitlist for a kidney transplant are those with a prior kidney failure. While most transplant failures occur from antibody mediated rejection, up to a third of failures are due to non-adherence. Non-adherence can come in many forms and often carries with it psychosocial roots, such as medical mistrust, low sense of mastery, depression, and weak social support. Hedayati et al. found that kidney transplant patients were more likely to take their medications than to adhere to lifestyle changes. At best patients were partially adherent, and at worst they showed complete non-adherence. These lifestyle steps included diet, exercise, self-monitoring, cancer prevention, and cardiovascular disease prevention. During follow-up visits, clinician concerns regarding non-compliance were ten times higher in patients that eventually experienced transplant failure. Ultimately, transplant failure puts patients at greater risk of death (all cause-mortality, 32%), including cardiovascular-related mortality (53%) and infection-related mortality (145%). However, a study out of Australia and New Zealand found that acute rejection occurring within the first 6 months of kidney transplant was also a significant risk factor for non-health related deaths, such as those that occur as a result of car accidents, suicides, and withdrawal from care (hazard ratio 1.49, CI 1.15-1.92). 

How to help improve your patient's odds of a successful kidney transplant

We asked Dr. Rabb what ESRD patients can do to improve transplant success. He recommended “a strong partnership between the patient and the transplant team, working together to identify modifiable elements that can be addressed to help each patient have a successful transplant. Among the most important psychosocial components evaluated are the likelihood of adherence to taking immunosuppressive medication and close medical follow-up, which are critical for the success of the transplant.” In the end, altering one’s thoughts and feelings about kidney disease, developing a strong support system, and committing to medical adherence are fully within the control of the patient even when it feels like very little else is, which can be empowering.

The authors report not conflicts of interest.

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