DRAFT – NOT GOVERNMENT POLICY
Donation rates and trends in New Zealand and the potential scope to increase deceased donation
Contents
Purpose
Executive Summary
Donation rates and trends
Scope to increase deceased donation rates
New Zealand donation rates – how have they changed over time?
Figure 1: Number of deceased donors over the last 20 years (1995-2014)
Figure 2: The rate of deceased donors (per million of population) over the past 20 years (1995-2014)
Figure 3: Instances of donation after brain death (DBD) and donation after circulatory death (DCD)
Table 1: Ethnicity of deceased donors
Figure 4: Number and rate per million of population of live donors over the last 20 years
Donations rates - how well do we compare to similar countries?
Figure 5: Worldwide actual deceased and live organ donors 2013 (pmp)
Figure 6: Worldwide actual deceased organ donors 2014 (pmp)
Figure 7: Donation rates (pmp) for New Zealand compared to Australia and the United Kingdom
How well do we utilise the donations we have?
Figure 9: Total number of organs transplanted from New Zealand deceased donors
Figure 8: Number of organs transplanted from New Zealand deceased donors
How much demand and unmet need is there?
Kidneys
Figure 10: Number of patients accepted for kidney transplants (full and active waiting list numbers at the end of the month) - January 2005 to October 2015
Figure 11: Average waiting time before a transplant for a kidney – 2005 to 2014
Figure 12: Number of patients removed from the waiting list without receiving a kidney transplant – 2005 to 2014
Hearts
Figure 13: Number of patients on the waiting list for a heart at the end of the month - January 2005 to October 2015
Figure 14: Average waiting time before a transplant for a heart – 2005 to 2014
Figure 15: Number of patients removed from the waiting list without receiving a heart transplant – 2009 to 2014
Lungs
Figure 16: Number of patients on the waiting list for a lung at the end of the month - January 2005 to October 2015
Figure 17: Average waiting time before a transplant for a lung – 2005 to 2014
Figure 18: Number of patients removed from the waiting list without receiving a lung transplant – 2009 to 2014
Livers
Figure 19: Number of patients on the waiting list for a liver at the end of the month - January 2005 to October 2015
Figure 20: Average waiting time before a transplant for a liver – 2005 to 2014
Figure 21: Number of patients removed from the waiting list without receiving a liver transplant – 2005 to 2014
What is the potential for increasing deceased organ donation?
Death audit data - Time trends
Table 3: Death Audit Numbers
Table 4: Percentage of patients who progress though the potential donation steps
Death audit data – Scope to increase deceased donation
Analysis 1: Potential scope to increase deceased donation based on what Australia has achieved
Analysis 2: Potential scope to increase deceased donation based on an analysis of missed donation opportunities
Table 5: Summary of estimates of the scope to increase deceased donation
Appendix A:
Purpose
This paper summarises the main data available on organ donation in order to present a clear picture of the current situation in New Zealand, how donation rates have changed over time, and the potential scope for improvement that this review could aim to achieve.
Executive Summary
Donation rates and trends
New Zealand has low deceased donation rates compared to other countries. In 2014 (and for 2015 year to date) the donation rate improved, although our performance is still low comparatively and lower than the donation rate per million of population (pmp) achieved in the late 1990s.
In contrast, the number of live organ donors has generally followed an increasing trend over the last 20 years and New Zealand has comparatively high rates of live donors pmp.
The waiting list information provides a clear indication that the demand for kidneys is greater than the number of kidneys currently donated by deceased and live donors and that this gap is increasing. There is also some indication that the availability of hearts, lungs and livers is not meeting demand, but the gap is stable or for livers possibly decreasing. This may reflect the way the waiting lists for these organs are managed (for instance, if the criteria is based on the likely availability of organs so that only those with the highest need are accepted onto the list, with the expectation that those on the list will receive an organ promptly).
Scope to increase deceased donation rates
Only a small number of people (less than 1%) will die in circumstances that make it possible for organs to be donated for transplantation. The two main circumstances where deceased donation is possible are as follows: donation after brain death (DBD) and after circulatory death (DCD) (otherwise referred to as cardiac death).
Based on the Death Audit Data, practices in clinical settings do appear to be improving with an increase in the percentage of potentially brain dead patients tested for brain death and an increase the percentage of formal family discussions on donation occurring. However, there has been a decrease in the percentage of donation that occur following formal discussion with families.
In terms of the scope for increasing deceaseddonation rates, the number of brain dead patients provides the upper bound of the maximum possible number of brain dead donors. This paper includes two analysis of the potential scope for increasing the number of donors.
The first analysis is based on the potential pool of brain dead patients and the rates achieved at each stage of the donation process by Australia following its reform. This provides an estimated increase of 39%, but is based on DBD only. Adding an additional 10%, to reflect the likelihood of some DCD occurring, results in an estimated increase in donors of 52%.
Organ Donation New Zealand (ODNZ) conducted an analysis of the missed donation opportunities based on the audit filters included in the death audit data it receives. Based on this analysis, ODNZ estimated there is the potential to increase the number of donors by 20 to 40%.
Considered together, a realistic objective for the review to aim for would be a 40% increase in donation, which would result in 18 additional donors per year. If an average of three organs were successfully transplanted from each deceased donor, this increase would result in an additional 54 patients receiving an organ each year.
New Zealand donation rates – how have they changed over time?
Figure 1: Number of deceased donors over the last 20 years (1995-2014)
Source: International Registry on Oran Donation and Transplantation
The number of deceased donors in New Zealand has been quite variable. The number of deceased donors increased from 1995 to a peak of 46 in 1998, before reducing and stabilising in the mid to upper 30s for the next 15 years, with a couple of particularly low performing years in 2005, 2006, and 2008.
The increase in donors in 2014 returned New Zealand to level achieved in 1998. The figures fromJanuary to 4 November 2015 indicate the increase in 2014 has been sustained, as there have already been46 deceased donors[1].
Figure 2: The rate of deceased donors (per million of population) over the past 20 years (1995-2014)
Source: International Registry on Organ Donation and Transplantation
Looking at the rate of donors (as measured by the number of donors per million of population (pmp)) over the past 20 years, there has been no sign of significant fluctuation from the twenty year average of 9.3 pmp (ie, any year to year change has been within the control limits of normal variance).
While the number of donors achieved last year was a definite improvement over the number of donors achieved in the last 15 years, our rates per million of population are still lower than they have been in the past. This could be considered to imply that there is potential for NewZealand to increase its rates to at least the level previously achieved. However, donation rates are impacted by the potential pool of donors (i.e. the number of people that in intensive care units who have suffered a fatal illness or injury which has led to severe and irreversible brain damage). The number of road deaths in New Zealand has been decreasing since the late 1980[2], which is likely to have impacted the size of the pool of potential donors. The section on ‘what is the scope of improvement’ later in this paper (pX) considers what the scope for improvement might be, based on the size of the potential pool of donors.
Figure 3: Instances of donation after brain death (DBD) and donation after circulatory death (DCD)
Source: ODNZ. 2014. Annual Report 2014.
The majority of New Zealand’s deceased donors donate following brain death DBD). Donation following cardiac death (DCD) does occur in New Zealand, but to a much lower extent. The national protocol for DCD was established by ODNZ in 2007.
Given the current low number of DCDs increasing the number of DCD could be an avenue for increasing New Zealand’s overall donation rates. However, the identification of a potential DCD is more difficult, as it requires a clinical judgement of how long it will take for the patient to die following the withdrawal of treatment. DCD is only possible if the patient dies within a timeframe that allows for the organs to be removed and still function well in recipients (this is currently 60 minutes for kidneys)[3].
Table 1: Ethnicity of deceased donors
2010 / 2011 / 2012 / 2013 / 2014 / AverageEuropean / Caucasian / 32 (78%) / 30 (79%) / 28 (74%) / 29 (81%) / 36 (78%) / 31.0 (78%)
Māori / 5 (12%) / 3 (8%) / 6 (16%) / 3 (8%) / 5 (11%) / 4.4 (11%)
Pacific Islander / 1 (2%) / 4 (11%) / 1 (3%) / 0 (0%) / 1 (2%) / 1.4 (4.0%)
Asian / 2 (5%) / 1 (3%) / 3 (8%) / 3 (8%) / 1 (2%) / 2.0 (5.0%)
Other / 1 (2%) / 0 (0%) / 0 (0%) / 1 (3%) / 3 (7%) / 1.0 (3.0%)
Total / 41 (99%) / 38 (101%) / 38 (101%) / 36 (100%) / 46 (100%) / 39.8 (101%)
Source: ANZOD Registry. 2015 Annual Report.
Averaged over the past five years, 11% of donors were Māori, while 16.6% of the population were classified as Māori in the NZ Health Tracker (for the year ended 2013). Four percent of donors were Pacific Islanders, while Pacific Islanders make up 7.3% of the population. Five percent of donors were Asian, while none percent of the population are classified as Asian.
This information suggests that these ethnicities are under-represented in terms of organ donation. However, whether this is an issue depends on the degree to which the ethnicity impacts the matching of donors to recipients (ie. are there clinical differences between ethnicities that impact whether an organ from a patient from one ethnicity will suit a recipient from another ethnicity?). This is something we need to understand further.
Figure 4: Number and rate per million of population of live donors over the last 20 years
Source: International Registry on Organ Donation and Transplantation
New Zealand’s number of live organ donations has generally followed an increasing trend over the last 20 years. However, after peaking at 76 in 2008, the number dropped successively in each of the next four years, declining to 57 by 2012. From 2012 numbers increased again, possibly linked to initiatives introduced as part of the 2012 and 2014 Budgets. By 2014, numbers had regained 2008 levels. It is unclear whether this recent improvement will be sustained.
Donations rates - how well do we compare to similar countries?
Figure 5: Worldwide actual deceased and live organ donors 2013 (pmp)
In 2013, New Zealand had a low deceased donation rate compared to other countries, placing in the bottom half of comparative graphs (refer figure 5).
In contrast, New Zealand has comparatively high rates of live donors per million of population (refer Figure 5) ranking 19th out of the 64 countries that provide data to the International Registry on Organ Donation and Transplantation. Although there is a large difference between the rates of the countries ranked in the top third of countries, with the top performing country reporting 46.6 pmp compared to the 21st highest performing country reporting 13.2 pmp.
One potential reason for New Zealand’s higher performance in relation to rates of live donors is that the low deceased donation rates and resulting long waiting list for kidneys has led to patients seeking live donors. Countries with high deceased donation rates generally have much lower live donation rates and vice versa (although the USA is an exception; while it has higher deceased than live donation rates, it is in the top 10 performing countries for both) (refer Figure 5).
Each live donor donates one organ (or part of one organ) compared to deceased donors who donate an average of around three organs (refer figure 9). Therefore, while live donations do assist in addressing the gap between those that need organs and the number of organs available, it takes a greater increase in live organ donors to achieve the same outcomes as a lesser increase in deceased organ donors. In addition, live organ donation is not possible for all organs. In New Zealand live organ donation occurs for kidneys and livers[4].Therefore, deceased organ donation is particularly important for patients requiring a heart or lung. Although it is worth noting that patients with a live donor kidney transplant show improved survival compared to those with a deceased donor transplant[5].
Figure 6: Worldwide actual deceased organ donors 2014 (pmp)
Source: International Registry on Organ Donation and Transplantation
For 2014, New Zealand’s rate has improved to 10.2 deceased donors per million people (pmp). However, this continues to place New Zealand in the bottom half of the countries that have reported 2014 figures (particularly given a greater proportion of the lower performing countries have not yet reported data). New Zealand’s 2014 donation rate at 10.2 pmp is still much lower than the highest preforming country (Spain with 36 pmp) and countries that have recently undertaken reform programmes, eg, the United Kingdom (with 20 pmp) and Australia (with 16 pmp).
Until the mid-2000s New Zealand and Australia had very similar rates of deceased donation per million of population to New Zealand (refer figure 7). Following a taskforce in 2007-08, Australia has successfully implemented a reform agenda to increase its donation rates.
The United Kingdom has previously had higher rates than both New Zealand and Australia. Following its own taskforce in 2007-08, it has also been successful in increasing donation rates, resulting in an increasing gap between its rates and New Zealand’s (refer figure 7). Although, both Australia and the United Kingdom experienced a slight decrease in donation rates in 2014.
Figure 7: Donation rates (pmp) for New Zealand compared to Australia and the United Kingdom
Source: International Registry on Organ Donation and Transplantation
How well do we utilise the donations we have?
Figure 9: Total number of organs transplanted from New Zealand deceased donors
(Note, some organs from New Zealand donors are transplanted to Australian recipients and vice versa)
Source: ODNZ Annual Report 2009, 2010 and 2014
While the number of deceased donors had been tracking downwards from 2009 to 2013, the number of organs transplanted from deceased donors over this time period have been reasonable stable (ranging between 114 and 123 organs per year). In 2014, there were 136 organs transplanted from a deceased donor, reflecting the increase in donations that year.
Figure 8: Number of organs transplanted from New Zealand deceased donors
Source: ODNZ Annual Report 2009, 2010 and 2014
In terms of the specific organs transplanted from deceased donors, in 2014 there 67 kidneys transplanted, 17 Hearts, 20 lungs, 32 livers and 2 pancreas.
As a result, 130 patients received a transplant (with one patient receiving a double kidney, one combined heart and lung transplant, two combined liver and kidney transplants and two simultaneous kidney and pancreas transplants).
Another way to consider how well donations are utilised would be to analyse the average number of organs donated per deceased donor. However, changes in the types of deceased donation that occur will impact the average number of organs retrieved per deceased donation. For example,if one of the mechanisms to increase the number of donors was to encourage more donation after cardiac death or apply wider criteria for donation after brain death criteria, this would result inmore organs overall, but a smaller average number of organs per deceased donor. Therefore, the more relevant metric is the total number of organs transplanted.
How much demand and unmet need is there?
There is no perfect measure of demand or unmet need. The best indication is provided by the number of people‘accepted’ for a transplant. However, this is likely to be lower than the number of patients who would benefit from a transplant, as access to waiting lists could be impacted by the availability of organs. If there were more organs available it would be likely that the criteria would be amended and more patients would be accepted for a transplant, particularly for lungs, livers, and hearts. The number of patients accepted for waiting lists is also impacted by advances in the therapies available to treat different conditions. Waiting list data does not include information on ethnicity.
Kidneys
Figure 10: Number of patients accepted for kidney transplants (full and active waiting list numbers at the end of the month) - January 2005 to October 2015
Source: NZ Blood Service
The ‘total’ line in figure 10 includes all those patients accepted for a transplant, including a proportion who have been temporarily suspended since then. The ‘active’ line includes only those patients who would be available to receive a kidney if one wasto become available today.