In Issue 22 of Kidney Talk, we announced the winners of our KPA Research Competition. In this article, Ms Hannah Maple, one of our two winners, describes her project and how her research will help support kidney patients’ quality of life.
Mr Nicos Kessaris and I are delighted to have won one of the KPA Research Grants to further pursue our research into quality of life outcomes in dialysis and transplant patients. We have been collecting data from patients transplanted at Guy’s Hospital for the last eight years and this has taught us a number of different things.
We have learned that while a transplant clearly has psychosocial benefits over remaining on dialysis, the outcomes vary considerably. Most significantly we have learned how important quality of life and psychosocial outcomes are to patients, whose lives are inevitably affected in lots of different ways by kidney disease. The importance of psychosocial wellbeing, and strategies to improve this as much as possible, cannot be over-emphasised.
The aims of our project are to further understand how quality of life improves after transplantation and to find out why some patients do not do as well as others. Until now it has only been possible to collect data from patients after their transplant, and very few studies have been able to follow patients through the transplant experience. This is mainly because the timing of a transplant is very unpredictable.
We intend to achieve our aims by integrating a quality-of-life assessment into the transplant workup currently conducted by our team of kidney transplant nurses and doctors. We aim to do this by asking patients who attend the surgical transplant assessment clinic to complete a quality-of-life questionnaire prior to being activated on the deceased-donor waiting list, or being listed for a living-donor transplant. We will also ask those already activated on the list whether they would like to participate.
Participants will be given further questionnaires at set timepoints while they wait for their transplant so that we can assess the ongoing psychosocial impact of waiting for a kidney to become available. Once a patient has had their transplant, we will ask them to complete the questionnaire again on a couple of occasions thereafter, so that we can see what difference a transplant makes. Additional questions about the operation and the recovery period will also be included.
Collection of data before a transplant will allow us to understand the impact of dialysis and kidney disease on a range of psychosocial factors and also understand what it is like waiting for a transplant. Collection of data after a transplant will allow us to understand how the life of a patient with kidney disease changes once they are free from dialysis.
Our longer-term aims are to use this data to help patients achieve the best quality of life possible, both before and after they have a transplant. We would like to improve patients’ education and wellbeing on dialysis so that, when an organ becomes available, they make the smoothest possible transition into becoming a transplant patient and are able to fully benefit from all that a transplant has to offer.
We are grateful to the KPA for their support in this project.
Note: A future issue will include an article by our second winner, Mr Pankaj Chandak.