The aim of the Live Kidney Donation Programme is to increase the number of people donating kidneys to patients with end stage (severe) kidney disease either before commencing renal dialysis or receiving renal dialysis treatment.
The programme team aims to build knowledge and skills (health literacy) amongst potential donors, recipients and their whānau (consumer level change); and infrastructure (including how to build health literacy) within clinical and patient support services who work with patients and whānau (system and health professional level change).
Growing need for kidney donors
Currently 2370 people in New Zealand require renal dialysis because they have end stage kidney disease. The average life expectancy of a person on dialysis is 4–5 years. At the moment 600 people nationally are on waiting lists for a kidney transplant. There are never enough kidneys donated by families of people dying in New Zealand hospitals. This means only about half of the people on national waiting lists will ever receive a kidney transplant. The rate of kidney transplants in New Zealand is lower than other countries.
Persistent inequalities and inequities for Māori and Pasifika populations
Nationally, the most common groups of people on dialysis with end stage kidney disease are New Zealand Māori, Samoan and Cook Island Māori.
Research carried out in 2009 by Mauri Ora Associates for the Ministry of Health identified these barriers to transplantation and donation within Māori and Pasifika priority populations:
- a lack of suitable educational resources that are culturally appropriate
- a lack of cultural competence, health literacy and advisory skills within transplant team members
- a lack of focus by pre-dialysis educators and renal physicians on transplantation as a first option before starting dialysis
- inconsistent care and referral from primary care providers
- poor staffing in terms of in-house transplant co-ordinators.
Lack of knowledge in priority populations
The research by Mauri Ora Associates confirmed that there is a lack of knowledge amongst patients, whānau and communities about transplantation and the implication of live kidney donations. A kidney transplant means that patients have a longer life and better quality of life because they are no longer having regular dialysis.
The literature review from the Mauri Ora research also identified that there is no one Māori or Pacific accepted perspective about transplantation, and any initiatives that try and engage with these populations will need to take into account that patient and whānau views about transplants and donation will have come from a number of different sources and are likely to relate very much to the particular situation of each patient and their whānau.
End stage kidney disease has significant financial, physical, mental health and spiritual implications for patients and whānau. New Zealand has a large number of people with end stage kidney disease. The healthcare costs for this group is 1–2% of New Zealand’s entire health care expenditure. As mentioned earlier the numbers of people with end stage kidney disease is growing with significant implications for the health system. The cost of a kidney transplant is one third of the overall cost of dialysis.