I read the following in Kidney Health New Zealand’s annual report and with KHNZ and Paula Martin’s permission I have reproduced her great report. I am thrilled to see such important research being undertaken and as you’ll read, Paula has great motivation. Paula is a PhD Candidate in the Health Services Research Centre, School of Government, Victoria University, Wellington, New Zealand.
Kidney Health New Zealand Research Grant
In 2006 I donated a kidney to my husband. At the time, I was just focusing on getting through the year long donor work up and supporting my husband while we coped with the impacts on our lives of him being on peritoneal dialysis. Only after the transplant did I realise just how few living donor transplants are done each year in New Zealand. In 2006, only 46 other live donors gave a kidney to someone; last year the number had climbed to 57 live donors, but the number of people needing a transplant had also increased dramatically, with around 600 on the official waiting list.
What could be done to increase the current rate of kidney donations? The low number of transplants is a concern because we know that for most people with end stage renal failure, a transplant is the best treatment. In addition, it is cheaper than keeping people on dialysis. In order to develop solutions, we needed research to tell us what the barriers to living donor kidney transplantation are in New Zealand; how similar to, or different from, barriers in other countries these are; and what people involved in the renal community here think could be done about those barriers, so that more people wanting a transplant can get one.
In 2010, I decided to do some research on this topic to fill this gap. Supported by a research grant from Kidney Health New Zealand, I’m currently undertaking a PhD in Public Policy based at the Health Services Research Centre in the School of Government, at Victoria University of Wellington. My focus is solely on living donation, not deceased. Around half of all kidney transplants now come from living donors and with the increasing demand for kidney transplants and the shortage of deceased donors, living transplantation has to be a critical part of solving the problem. The barriers to living donation and deceased donation are different so it’s important to think about them separately.
We know from overseas research that there can be many different barriers: for example, patients needing a transplant often find it difficult to approach their family and friends about whether they might consider living donation; people who want to be donors can face practical barriers such as loss of income while they take time off to recover from the surgery; and many people who would like to be donors discover that they aren’t compatible with the person they want to donate to, or that they have a medical problem of their own which makes them unsuitable. A particular problem in NZ is that Maori and Pacific people often find it harder to get a transplant than European/Pakeha. There are likely to be many different reasons for this. Cultural attitudes to organ donation may be one factor, but a bigger issue may be that it can be harder for these patients to find a donor who meets the strict medical suitability criteria because of things like the high rates of Type II diabetes in these populations.
There is no single solution to this problem – this is an extremely complex issue and we’ll need a variety of different initiatives to make a difference to it. So, I’ve been looking at our legislation and current policies as well as how renal services operate on the ground, and talking to a range of different people – patients, renal specialists, transplant coordinators, patient support groups, managers in District Health Boards and senior government officials and politicians – to find out what they think the issues are.
Finding out what the issues are from a patient perspective has been a big part of the research. With the assistance of the three renal transplant units, I carried out a postal survey last year of all the people on the kidney transplant waiting list and received nearly 200 replies. I’ve followed that up with a small number of in-depth patient interviews. The early results of this part of the research suggest that, as in other countries, patients find it very difficult to “ask” someone to be a kidney donor which often stops them talking to their family and friends about living donation. Furthermore, patients that do get offers from people to be kidney donors often find they are incompatible or the potential donor is medically unsuitable for some reason. Health professionals I’ve interviewed have provided valuable insights into what the issues are from their perspective inside the health system.
I’m aiming to finish this research in 2013. I hope it will be of use to practitioners, policy makers, patient groups and anyone else interested in making a difference to this problem.
Thanks to Kidney Health New Zealand for supporting this work with a grant towards the costs of doing research.