Healthcare professionals can assist patients with managing post-kidney transplant expectations

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Abstract

Kidney transplantation is the preferred treatment option for end-stage kidney disease. However, transplantation is not a cure and the prospective recipient needs to carefully evaluate the risks and benefits of receiving a transplant before agreeing to have the transplant. The objective of this commentary is to demonstrate that many kidney transplant recipients have unrealistic expectations of what life after transplantation involves. After monitoring participants in a randomised controlled trial through the first 12 months post-transplantation, we question whether patients understood the impact of receiving a transplant. In our study, participants were not prepared for the considerable time and effort involved in adhering to their medications. Participants felt challenged by the constant hospital, pathology and pharmacy visits; they were fearful that their transplant could reject; and they struggled with adapting to their new way of living. This paper offers new insights into understanding the life of patients post transplantation and the challenges of informing patients about the consequences of kidney transplantation. Understanding the challenges faced by new transplant recipients can help health professionals educate patients about life post-transplantation so patients have a genuine understanding of what they are consenting to, which is likely to enhance medication adherence and ultimately, graft success.

Introduction

The global prevalence of chronic kidney disease exceeds 10% of the world's population.1 Over time, the disease can progress to end-stage kidney disease, which would mean the patient requires kidney replacement therapy, either by dialysis or a kidney transplant for survival. The number of people estimated to be receiving kidney replacement therapy has increased steadily in the last 20 years, and data suggest that this trend is likely to continue, driven by demographic change, especially aging of the population; improvements in access to dialysis in countries with growing economies; and an increase in the incidence of diabetes and hypertension.2

For those who are fortunate to receive a kidney transplant, recipients are required to adhere to life-long immunosuppressant medication to minimise the risk of rejection.3 Therefore, the prospective recipient needs to carefully evaluate the risks and benefits of receiving a kidney transplant before agreeing to have the transplant. Furthermore, it is important that patients fully understand what is involved in managing the transplant and what to expect after transplantation, and to be better prepared for the challenges they may face after transplantation. If patients are motivated and understand the implications of kidney transplantation, the probability of medication non-adherence and the risk of rejection are likely to be reduced and valuable healthcare resources will not be wasted.4

The objective of this commentary is to demonstrate that many kidney transplant recipients had unrealistic expectations of what life after kidney transplantation involves and patients did not imagine that having a transplant would be so complex and difficult.

A systematic review found that in comparison to other solid organ transplant recipients, kidney transplant recipients were the most non-adherent with 36% of kidney transplant patients displaying signs of non-adherence, twice the number observed in heart recipients and over five times greater than liver transplant recipients.5 Therefore, in 2014, we commenced a randomised controlled trial (RCT) with the aim of testing an intervention designed to improve medication adherence in kidney transplant patients (ACTRN12614000608662). The project involved all five public hospitals that provide acute kidney transplantation for adults with end-stage kidney disease in the state of Victoria, Australia. The intervention consisted of a home medication review, a 20-min consumer-driven video and health coaching. Patients who were at least 1 month post-transplantation were recruited to the study and their medication adherence was measured over 12 months. The primary outcome used to measure medication adherence was electronic medication monitoring using the Medication Event Monitoring System® (MEMS, WestRock, Switzerland) and obtaining the participants' pharmacy refill records. Adherence was also assessed through self-report surveys conducted over the telephone every 3 months, where the researcher made notes of what the participants said during these phone calls. Participants were also asked to keep a diary over the 12 months they were enrolled in the study. After monitoring participants through this first 12 months post-transplantation, we question whether participants understood the consequences of receiving a transplant and fully appreciated the ongoing commitment to care for their transplanted kidney.

Section snippets

Patient education: does it always happen?

In Australia, approximately 70% of kidney transplants come from a deceased donor and the number of living donor transplants have been falling as a proportion of all transplants since 2009.6 For patients who receive a transplant from a live donor through elective surgery, there is the opportunity to plan and educate patients about their medication and life after transplantation.7 In the case of those participants in our study who received a transplant from a deceased donor, details of what to

Living with medication and a new chronic illness

Kidney transplantation can be seen as a means to improved health, as patients on a waiting list have higher mortality rates and lower quality of life compared with those who have received a kidney transplant.14, 15, 16 However, participants in our study were susceptible to illness because they are required to take immunosuppressant medications to prevent their body rejecting the newly transplanted kidney. During the 12 months that participants were followed, many dealt with viral infections as

Conclusion

This paper offers new and essential insights into understanding the life of patients post kidney transplantation and the challenges of informing patients about the consequences of kidney transplantation prior to accepting a kidney. This knowledge can improve health professionals' ability to communicate comprehensively with patients prior to transplantation, so patients understand what is involved with receiving a kidney transplant for optimal patient outcomes. Kidney transplantation is

Acknowledgements

This study was supported by an Australian National Health and Medical Research Council Partnership grant (Project ID 1056717).

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    38th Report, Chapter 7: Transplant Waiting List

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