INCREASING THE RATE OF LIVING DONOR KIDNEY TRANSPLANTATION IN NEW ZEALAND ...

323 Pages·2013·2.91 MB·English

INCREASING THE RATE OF LIVING DONOR KIDNEY TRANSPLANTATION IN NEW
ZEALAND: DEVELOPING AN EVIDENCE BASE

BY

PAULA MARIE MARTIN

A thesis
Submitted to the Victoria University of Wellington
in fulfilment of the requirements for the degree of
Doctor of Philosophy

Victoria University of Wellington
2013
Abstract
Increasing numbers of New Zealanders are experiencing end-stage renal failure, requiring
kidney transplantation or dialysis. A transplant from a living kidney donor is the preferred
treatment, offering better quality of life than dialysis, and greater life expectancy and cost-
effectiveness than dialysis and deceased donor transplantation. Living donor transplant
rates in New Zealand have plateaued and may even be declining at a time when many
comparable countries are experiencing sustained increases. Viewing this issue as a complex
policy problem, this research aimed to identify how rates of living donor kidney
transplantation could be increased in New Zealand. Based on Walt and Gilson’s health
policy triangle, which suggests that understanding policy issues requires attention not only
to content (policy options) but also processes, contextual issues and actors, this research
asked firstly, what the barriers are for patients in the journey to living donor
transplantation, and secondly, why greater attention has not been paid to how to increase
current rates, given evidence of better outcomes for patients and cost-effectiveness.
The research took a patient-centred, systems perspective and used a pragmatic,
interdisciplinary, mixed-methods research design. Methods included a survey of kidney
transplant waiting-list patients; interviews with patients, renal health professionals and key
informants; document analysis; and a survey of health managers. A Five-Stage Model of the
living donor kidney transplant process was developed to map specific barriers in the journey
to transplantation and Kingdon’s multiple streams agenda-setting model was used to
examine the issue of why so little attention had been paid to living donor kidney
transplantation in New Zealand.
The research found that, in common with patients elsewhere, New Zealand patients are not
systematically informed about living donor transplantation, would like to receive a
transplant but have concerns about health and financial impacts on donors, and face
challenges in approaching people in their networks about living donation. Incompatibility
and medical unsuitability are major barriers for potential donors who do come forward.
Issues with existing service models, configuration of key roles in transplant services, and
delays in donor work-up processes are all evident. Perceived ethical constraints may limit
how willing health professionals are to promote living donation, requiring both potential
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recipients and donors to be very proactive to successfully navigate the living donation
process.
There has been political will to address organ shortages in the past but there has been little
focus specifically on live donation. An absence of feasible and acceptable options for
decision-makers to consider, crowding-out by demand for dialysis services, lack of
leadership, absence of an effective advocate, and issues in funding and accountability
arrangements may all have contributed to why live kidney transplantation has not had more
prominence on the policy agenda in New Zealand in recent years.
Overall, the research concludes that policy and practice in the wider system are not
adequately oriented to supporting living donor kidney transplantation as the preferred
treatment for end-stage renal failure. A comprehensive national strategy for increasing
New Zealand’s rate is recommended.

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Preface and acknowledgements
The motivation for this research came from two main sources. Firstly, my professional
experience as a policy manager in the Ministry of Health with oversight of the Vote: Health
Budget process from 2008-2010, which increasingly came to mean focusing on how to
improve value for money, as we sought to “live within our means” in the face of a reducing
rate of growth of health expenditure. Secondly, my personal experience as a living kidney
donor for my husband in 2006, and subsequent involvement in the renal community, for
example, as a Board member of Kidney Health New Zealand for two years.
It is fair to say that it was only after the transplant that I truly appreciated the tremendous
benefits of transplantation for someone with end-stage renal failure in comparison to
dialysis. When I realised how few renal transplants are done each year in NZ I began to
wonder why this was. I could find little previous research and the explanations I heard, for
example, that certain groups have cultural objections to organ donation, did not seem
entirely satisfactory (particularly given I am of Māori descent). As a health policy manager, I
was aware of how frequently concerns about rising dialysis expenditure were raised in the
context of needing to find savings. As I learned more about the costs of transplantation
compared to dialysis, I started to wonder why more was not being done to increase
transplant rates, given the potential benefits for patients and for the health system. The
combination of these factors led to this research.
Two articles based on this research have been published to date (1-2) and the material is
included in this thesis.
Many people supported me to make this research possible. My deepest thanks go to all the
patients who filled in the survey and were willing to share their experiences during
interviews. I am also grateful to the many health professionals and key informants who
made time for interviews and were willing to talk so openly.
Dr Grant Pidgeon (Capital and Coast DHB), Dr Ian Dittmer (Auckland DHB), Dr Nick Cross
(Canterbury DHB), Sarah Armstrong (Canterbury DHB) and Dr Norman Panlilio (Mid-Central
DHB) all facilitated the distribution of the patient survey in their region.
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My thanks go to the many individuals who provided clinical advice and other background
information about transplant services in NZ and answered many ad hoc questions; in
particular, Dr Grant Pidgeon, Dr Ian Dittmer, Dr Nick Polaschek (Ministry of Health),
Professor Kelvin Lynn (Kidney Health New Zealand), Carmel Gregan-Ford (Kidney Health
New Zealand) and Janice Langlands (Organ Donation New Zealand).
I am grateful to Kidney Health New Zealand for a grant towards the costs of the research
and to Susan Bartel for proofreading.
I was fortunate to have as my supervisors Professor Jacqueline Cumming and Dr Jenny
Neale, both of Victoria University, who consistently provided invaluable advice, support and
encouragement.
Finally, my husband Michael has been unfailingly patient, interested and supportive and I
cannot thank him enough.

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Table of Contents
1 Chapter One: Introduction ............................................................................................................................. 1
1.1 The issue ............................................................................................................................................................................................ 1
1.2 New Zealand situation ............................................................................................................................................................... 3
1.3 Framing the problem .................................................................................................................................................................. 6
1.4 Ethical issues in LDKT ................................................................................................................................................................ 8
1.5 The research questions............................................................................................................................................................ 11
1.6 Overview of the NZ environment........................................................................................................................................ 13
1.6.1 Legislative and policy framework ............................................................................................................... 13
1.6.2 Organisation of services ................................................................................................................................. 14
1.7 Organisation of the thesis ...................................................................................................................................................... 16
2 Chapter Two: Theoretical framework and research design .............................................................. 19
2.1 Introduction .................................................................................................................................................................................. 19
2.2 Theoretical framework – a systems perspective ........................................................................................................ 19
2.3 Stages in the Living Donor Kidney Transplant Process .......................................................................................... 23
2.3.1 Five-stage model of LDKT .............................................................................................................................. 23
2.3.2 Overview of barriers at each stage ............................................................................................................. 23
2.4 Research design (1): Paradigm – a pragmatic, mixed-methods approach .................................................. 26
2.5 Research design (2): Methodology .................................................................................................................................... 27
2.6 Research design (3): Specific data collection methods and analysis ............................................................... 29
2.6.1 Path 1: Barriers to LDKT ................................................................................................................................ 29
2.6.2 Path 2: Attention to LDKT .............................................................................................................................. 35
2.6.3 Qualitative analysis .......................................................................................................................................... 37
2.7 Research design issues ............................................................................................................................................................. 39
2.7.1 Insider research ................................................................................................................................................ 39
2.7.2 Ethics of the research ...................................................................................................................................... 40
3 Chapter Three: Barriers to LDKT – Stages 1-3 ....................................................................................... 42
3.1 Introduction .................................................................................................................................................................................. 42
3.2 Stage 1: Transplantation is an option ............................................................................................................................. 42
3.2.1 Overview .............................................................................................................................................................. 42
3.2.2 Results .................................................................................................................................................................. 45
3.3 Stage 2: Patient is told about, and decides to pursue, LDKT ............................................................................... 50
3.3.1 Overview (2a): Discussions with patients about LDKT ....................................................................... 50
3.3.2 Results (2a): Discussions with patients about LDKT ............................................................................ 55
3.3.3 Overview (2b): Patient willingness to pursue LDKT and accept offers .......................................... 66
3.3.4 Results (2b): Patient willingness to pursue LDKT and accept offers .............................................. 69
3.4 Stage 3: Find a willing donor ............................................................................................................................................... 81
3.4.1 Overview .............................................................................................................................................................. 81
3.4.2 Results .................................................................................................................................................................. 87
3.4.3 Addressing barriers to finding willing donors ...................................................................................... 106
3.5 Summary: Stages 1-3 .............................................................................................................................................................119
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4 Chapter Four: Barriers to LDKT – Stages 4-5 and cross-cutting issues ........................................ 121
4.1 Stage 4: Donor is worked up and suitable ...................................................................................................................121
4.1.1 Overview ............................................................................................................................................................ 121
4.1.2 Results ................................................................................................................................................................ 126
4.2 Stage 5: Receive the transplant ........................................................................................................................................150
4.2.1 Overview ............................................................................................................................................................ 150
4.2.2 Results ................................................................................................................................................................ 151
4.3 Cross-cutting issues .................................................................................................................................................................153
4.3.1 Organisation of services ............................................................................................................................... 154
4.3.2 Orienting services towards LDKT ............................................................................................................. 159
4.4 Summary: Stages 4-5 and cross-cutting issues .........................................................................................................162
5 Chapter Five: Attention to LDKT: Getting on the agenda .................................................................. 164
5.1 Introduction ................................................................................................................................................................................164
5.2 Getting on the agenda ...........................................................................................................................................................164
5.2.1 Agenda-setting in the policy process ....................................................................................................... 164
5.2.2 The multiple streams model ....................................................................................................................... 166
5.3 Results ............................................................................................................................................................................................168
5.3.1 Overview of the main developments in NZ organ donation policy 2000-2012......................... 168
5.3.2 2000-2010: Why hadn’t more been done to try to increase rates of LDKT in NZ?................... 171
5.3.3 2011-2012: The policy window starts to open ..................................................................................... 214
5.4 Summary: Attention to LDKT ............................................................................................................................................218
6 Chapter Six: Discussion .............................................................................................................................. 220
6.1 Introduction ................................................................................................................................................................................220
6.2 Key issues......................................................................................................................................................................................221
6.2.1 Research Question 1: Barriers to LDKT in the patient journey ....................................................... 221
6.2.2 Research Question 2: Attention to LDKT: Getting on the agenda ................................................... 237
6.2.3 Ethical issues .................................................................................................................................................... 244
7 Chapter Seven: Conclusions ...................................................................................................................... 252
7.1 A strategy to increase LDKT in NZ ..................................................................................................................................252
7.2 Future research .........................................................................................................................................................................260
7.3 Final word ....................................................................................................................................................................................261
8 References ..................................................................................................................................................... 262
9 Annexes .......................................................................................................................................................... 299
9.1 Annex 1: Rates of LDKT internationally, 2010 ..........................................................................................................300
9.2 Annex 2: Patient survey ........................................................................................................................................................301
9.3 Annex 3: Patient interview guide .....................................................................................................................................307
9.4 Annex 4: Health professionals’ interview guide........................................................................................................309
9.5 Annex 5: Topics covered in key informant interviews ...........................................................................................310
9.6 Annex 6: Email survey questions to DHB managers ..............................................................................................311
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List of Tables
Page
Table 1 Characteristics of survey respondents and total 32
waiting-list population

Table 2 Characteristics of patient interviewees 34

Table 3 Number of waiting-list patients who reported 55
someone from the renal unit discussing LDKT with
them

Table 4 Patient preferences and willingness to accept a kidney 70
if offered

Table 5 Patient rankings of concerns about LDKT 72

Table 6 Number of patients who had discussed living donation 87
with family and friends and/or asked them to consider
donation

Table 7 Number of patients with any offer from a potential 97
donor, and any potential donor tested for
compatibility

Table 8 Number of patients with any offer from a potential 98
donor, and any potential donor tested for
compatibility, by ethnic group

Table 9 Sources of offers to consider living donation, and of 98
compatibility tests

Table 10 Conversion rate of offers to tests, by ethnic group 98

Table 11 Number of patients who had had at least one offer, by 99
donor recruitment activity

Table 12 Outcomes for potential donors who started the work - 127
up process (as reported by patients)

Table 13 Number of patients willing to consider Kidney Paired 129
Exchange

Table 14 Key events in organ donation policy in NZ, 2000 -2012 169

Table 15 Nuffield Council of Bioethics “Intervention Ladder” for 248
promoting donation
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List of Figures

Page
Figure 1 Expected years of life for a waitlisted patient with a 2
deceased donor kidney transplant compared to
dialysis, by age group

Figure 2 Number of dialysis patients, people on the kidney 4
transplant waiting list, and number transplanted in
NZ, 2000-2012

Figure 3 Numbers of kidney transplants from deceased and 5
living donors in NZ, 2000-2012

Figure 4 Rate of LDKT in NZ, 2000-2012 (number per million 5
population)

Figure 5 The health policy triangle 12

Figure 6 A social-ecological model for living donor kidney 22
transplantation in NZ

Figure 7 Stages in the LDKT process 24

Figure 8 Overview of methodology 28

Figure 9 Two-way kidney paired exchange 122

Figure 10 Options to widen the pool of donors 231

Figure 11 Components of a strategy to increase rates of LDKT in 254
NZ

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