INITIATIVES TO INCREASE LIVE AND DECEASED KIDNEY DONATION
This paper briefly summarizes the three initiatives being funded from the Budget 2012 announcement.
Improvements in Live Kidney Donation project:
Counties Manukau District Health Board and Kidney Society Auckland
The project aims to increase live donor transplantation in CMDHB, which is particularly poor for
Pasifika and New Zealand Māori. This objective will be achieved through the implementation of an
evidence based package of clinical initiatives that includes a Home Based Live Kidney Donor
Educational Programme using ethnically-based health educators, within a multi-facetted approach
including several other novel interventions. The project also includes the development of new
culturally sensitive and educational resources which build health literacy (skills and knowledge),
developed especially to facilitate informed choice amongst potential live kidney donors within these
two ethnic groups. The project is a partnership between Counties Manukau District Health Board
(CMDHB) and Kidney Society Auckland (KSA), with strong strategic collaborators in the areas of
health literacy and web development / IT.
The project is likely to have wide ranging benefits outside of CMDHB and the targeted population:
 The package of clinical initiatives implemented in the Project will be available for both national
and indeed international use. In particular, the educational resources and home-based health
education model are likely to benefit all Pasifika and Māori, irrespective of domicile and
country.
 Many of the initiatives are also effective in the general end-stage kidney disease population
as well as ethnic minorities, and will therefore also be relevant to renal services around New
Zealand that treat predominantly New Zealand European patients and populations.
 The project will generate increased awareness of chronic kidney disease in general, and
benefit patients across all stages of disease.
Recipient and Donor Initiatives
1. Educational Resources
Educational resources which build health literacy will be developed for patients and potential live
kidney donors who are either Pasifika (focusing on Samoan and Cook Island Māori) or New Zealand
Māori. The content will highlight a variety of ethnicity-specific outcome data and concerns, but at a
minimum will include:
1) information about eligibility for live kidney donation
2) the clinical evaluation required for live kidney donation
3) the donor selection and work up process
4) the surgical procedures for donation
5) discussion around concerns brought forth about these factors (e.g. safety of procedures, concerns
about recovery)
6) the available financial assistance to cover lost income.
Educational resources which build health literacy will also be developed for corresponding potential
live kidney recipients. The content will at a minimum include information around the quality of life and
health benefits of pre-emptive live kidney donor transplantation.
The development of the Pasifika and Māori resources will be led by Workbase® in collaboration with
the Steering Group, CMDHB clinicians, the KSA, and the CMDHB Pasifika and Māori Health teams.
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2. Inclusive Home Based Education with Ethnically Based Health Educators
Randomised controlled trials have demonstrated the effectiveness of inclusive home-based education
to address the concerns of live kidney donation. A key feature of this model is an educator role to
augment the donor co-coordinator, while focusing on breaking down medical mistrust, educating
about the criteria and process of live donation, addressing religious concerns, engaging in financial
counselling, and overcoming knowledge deficits and unmet concerns about the health risks of live
kidney donor changes. The programme will provide education around the options of paired kidney
donation, HLA desensitisation, and ABO-incompatible programmes.
The home-based education programme in the proposed Project will use ethnically based health
educators, who will be used to provide brief presentations in the home with the patient and his or her
invited guests. Health educators will receive extensive education and training in kidney disease,
dialysis, transplantation, live donation, and health literacy as well as crisis management.
3. Health Promotion by “Donor Experts”
In this Project, we will develop and educate lay “Donor Experts” to be available to potential live
donors, as well as potential recipients and their families / whaanau, friends and associates. It is
expected that “Donor Experts” will be people who have been a live kidney donor, or those who have
previously received a live kidney transplant. The “Donor Experts” will facilitate live donor enquiries
through one-on-one discussions to inspire and reassure potential donors. “Donor Experts” will receive
information on kidney failure and live donation, and will be taught how to build health literacy and
dispel myths about the process and actual offering.
Health Care Provider and Health System Initiatives
4. “Home and Kidney First” Policy
We will develop a formal “Home and Kidney First” policy for renal replacement therapy for CMDHB,
with appropriate endorsement from the Executive Leadership and Legal Teams at the DHB. Such a
policy will motivate broad clinical change in this area, especially with respect to educational sessions
and decision support for pre-dialysis patients. Following this, staff education including health literacy
will be undertaken to enhance the staff and organisational culture to orientate towards shared targets
between home therapies and pre-emptive transplantation.
5. Pre-emptive Transplant Education
In this project, potential recipients with near end-stage kidney disease will receive additional
education (including health literacy) in the pre-dialysis setting around the benefits and process of
pursuing live kidney donor transplantation. Content will be standardised such that the pre-dialysis
educators complete a checklist to ensure that all required content relating to pre-emptive transplant
education has been delivered.
6. Standardised Training for Primary Care Providers
In this Project, we will provide educational resources (including how to build health literacy with
patients and families) to General Practitioners and Practice Nurses in the form of education sessions,
posters for surgeries, and leaflets for distribution. In the first instance, this initiative will be directed to
practices with the largest number of enrolments covering our target population.
Population and Community Awareness
7. Community Based Live Donor Kidney Transplant Education
In this project, we will develop a community engagement framework for CMDHB Pasifika and Māori
communities, which will involve at least quarterly large scale community engagement sessions
(including building health literacy) at culturally appropriate venues (Churches, Maraes, non-healthcare
support groups). The KSA has extensive previous experience of such meetings as part of their core
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business, and will organise meetings along with the ethnically-based health educators who will lead
proceedings depending on the number and ethnicity of the participants, types of questions, and the
community environment.
8. Community-Leader Live Donor Kidney Transplant Education
Sustained and meaningful collaborations between medical-transplant professionals, religious leaders,
and community organisations is likely to help foster patient and family trust in health care providers’
recommendation for live donor kidney transplantation, and raise awareness and social support
especially.
We propose meetings with religious and political leaders, local media, and other community
organisations to provide education (including health literacy) around the benefits and process of
pursuing LDKT. This is especially relevant for Pasifika, where this intervention will be focused on
engagement with religious leaders at ethnic places of worship.
Formalization of a Paired Kidney Exchange Scheme for New Zealand:
ADHB
Key activities.
1. Collate and analyse data over the last five years from the NZ Tissue Typing Laboratory on
donor-recipient pairs who could be enrolled in a NZ PKE scheme
2. Review and summarise the international literature on kidney exchange schemes, with
particular reference to practices that have increased participation in those schemes
3. Work with stakeholders to identify barriers to enrolling donor-recipient pairs.
4. Define an agreed process/ protocol with key stakeholders, including the other transplanting
services, to address barriers and enrol all eligible patients in NZ PKE scheme
5. Disseminate the relevant protocol and implement the agreed process
6. Support renal services that are working up live transplants to develop effective processes
to identify and manage potential donors for paired exchange to optimize enrolments
7. Review the working of the new process/ protocol after six months and implement any
changes required to improve it.
8. In consultation with Kidney Health NZ and other patient support groups, develop patient
information / education resources for renal services and agree a means for patients to obtain
further information from their services
9. Disseminate patient information/ education resources for renal services
10. Work with key stakeholders to formalise governance of the NZ PKE scheme
11. Explore the need for national co-ordination of all live donor transplants with all stakeholders.
12. If national coordination of live donor transplants considered necessary, then work with key
stakeholders to formalise the governance / co-ordination of live donor kidney transplants.
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13. Continue discussions with the Australian Kidney Exchange (AKX) and the Australian Organ
Authority to determine if joining AKX is both viable and logistically possible and, if so, the
steps required to do so.
Increasing support to ICUs in relation to deceased organ and tissue donation:
Organ Donation New Zealand
ODNZ has been funded for increased resourcing to increase capacity to undertake the following
functions:
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provide a consultation service to ICUs 24 hours a day, seven days a week;
provide national coordination and organ and tissue retrieval 24 hours a day, seven days a
week;
provide a dedicated coordinator who travels with the team to coordinate the organ and
tissue retrieval;
enable timely analysis and reporting to ICUs on their ICU death audit; and
visit DHBs to provide feedback to ICUs and with them find ways of improving their
performance in the processes of organ and donation.
visit ICUs to provide education to ICU staff on all aspects of organ donation;
identification of potential organ and tissue donors
early referral of potential organ donors to ODNZ
determining, with ODNZ, the clinical suitability of potential donors
physiological support of potential donors
consultation with the coroner if required
working with the families of potential donors about donation
conducting a formal discussion of donation with families
determining brain death.
ODNZ will provide additional support to local staffing time in ICUs to:
• enable death audit data entry
• facilitate referral of potential organ and tissue donors.
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