The objective of this systematic review is to synthesize qualitative evidence relating to experiences of adults with end stage renal failure who are on dialysis and waiting for a renal transplant from a deceased donor.Background
Chronic kidney disease (CKD) is a progressive, irreversible condition diagnosed on the basis of a reduced glomerular filtration rate (GFR), abnormalities in the composition of the blood or urine or abnormalities observed by imaging.1 A diagnosis of CKD requires a GFR of <60ml/min/1.73m2 and the presence of kidney damage for a period of at least three months.2 CKD is categorized into five stages based on the GFR. Stage five CKD is also known as end stage renal failure (ESRF) and is said to occur when the GFR is <15ml/min/1.73m2 and when renal replacement therapy (RRT) is required in order to support life.2, 3 Treatment choices for RRT include hemodialysis (HD), peritoneal dialysis (PD) or kidney transplantation. Hemodialysis involves filtering the patient's blood across a semi-permeable membrane to remove toxins and excess fluid through combined use of diffusion and ultrafiltration.4 People receiving HD require the surgical creation of a vascular access5 and spend 12-24 hours per week connected to the HD machine.2 Peritoneal dialysis uses the peritoneal membrane to remove toxins and excess fluid through use of diffusion and ultrafiltration.6 Patients require a permanent peritoneal access device7 and perform a number of fluid “exchanges” daily.8 Kidney transplantation involves surgically transplanting a donor organ and suppressing the immune response to the grafted organ with immunosuppressive medication.9 Kidney transplantation has been recognized as the best RRT in terms of morbidity, mortality and quality of life (QOL).10, 11 At the end of 2012 is was estimated that over 150,000 people around the world were waiting for a kidney transplant.12Background
Donor organs for kidney transplant are available from either a living or deceased donor.9 The process of transplantation from either a living or deceased donor is protected with legislation including global agreements13 and national and regional laws.14-16 Some countries allow the pre-emptive listing of patients to receive a deceased donor transplant before they start dialysis, while others, including Australia, do not allow patients onto a waiting list until they have commenced dialysis.16 Because there are many more people waiting than there are available organs the waiting time is often prolonged for many years. However due to the nature of the organ allocation process it is possible, although rare, for a person to receive an organ after only a few months.17 The median waiting time for a kidney transplant from a deceased donor ranges from 3.1 to 4 years.17, 18 With other solid organ transplants such as liver, heart or lung, people die if an organ does not became available; but with kidneys, dialysis is able to maintain the patient's life for many years.19Background
While it is positive that dialysis is available to keep a patient alive while waiting for a transplant, the length of time waiting on dialysis has been shown to impact both physical20 and psychological aspects of QOL of patients.21,22 Limited quantitative data exists relating to people who are on dialysis and waiting for renal transplant from a deceased donor. Studies have looked at the effect of the length of time on dialysis before receiving a kidney transplant on the post transplant outcomes, and have found that increased time on dialysis is a strong independent risk factor for increased patient mortality and increased graft failure following renal transplantation.23 People on dialysis have been shown to have multiple stressors in their lives, with depression considered as the most common psychiatric abnormality.24 Meta-analysis of 52 studies reporting on QOL of people based on the different types of RRT indicated that scores of patients on dialysis (HD and PD) were lower compared to those with a functioning renal transplant.25 Qualitative studies looking at the experience of waiting for a transplant have been carried out, but many are related to organs other than kidneys.26-32 Transplantation of organs such as liver, heart and lung are lifesaving procedures and the experience of waiting is not the same as waiting for a kidney where life can be maintained indefinitely with dialysis. Studies examining the experiences of patients waiting for a transplant from a living donor33,34 are also not comparable because the donor is usually known to the recipient, either a relative or someone with an altruistic motive for donating35, and the dynamics of the relationship between the donor and the recipient alters the experience of waiting.36 Waiting for a transplant from a living donor is an active process with a finite goal; rather than the unclear, indefinite end point when waiting for a deceased donor.37Background
Qualitative studies that have examined the experiences of people on dialysis who are waiting for a deceased donor renal transplant have identified themes of “living in hope", “uncertainty” and “being on hold".21 Anxious and depressive symptoms have been shown to increase in patients during the waiting period.22 Although some primary research has been conducted, these studies have not been systematically reviewed. The purpose of this review is to examine the existing evidence of patients' experiences of being on dialysis and waiting for a renal transplant from a deceased donor to underpin the development of effective supportive interventions.Background
Prior to commencement of this review a search was performed through the Joanna Briggs Institute (JBI) Library, The Cochrane Library, CINAHL, Medline and PsycInfo to ensure no previous systematic reviews had been done on the experiences of adult patients on dialysis waiting for a renal transplant from a deceased donor.