NBTA report on Black, Asian and Minority Ethnic Organ Donation and Transplantation data

Transcription

1 NBTA report on Black, Asian and Minority Ethnic Organ Donation and Transplantation data July 0 Contents Page Supported by the Department of Health

2 INTRODUCTION ORGAN DONOR REGISTER (ODR) DECEASED ORGAN DONORS, TRANSPLANT RECIPIENTS AND TRANSPLANT WAITING LIST PATIENTS 5 LIVING DONORS AND RECIPIENTS 7 POTENTIAL DONORS 8 CONCLUSION 9 Appendix Figure - Ethnicity of ODR registrants at March 0, as recorded by NHS Blood and Transplant Figure - UK population by ethnicity, mid-0 estimates (thousands) and projections 0 Figure - Kidney statistics, April 007 March 0 Figure 4 - Pancreas and kidney/ pancreas statistics, April 007 March 0 Figure 5 - Cardiothoracic statistics, April 007 March 0 4 Figure 6 - Liver statistics, April 007 March 0 5 Figure 7 - Median waiting time to transplant in the UK 6 Figure 8 - Living donors and transplant recipients, April 007 March 0 Figure 9 - NHSBT Potential Donor Audit data, April 009 March 0 Figure 0 - National data from the NHSBT Potential Donor Audit for donation after brain death, Oct 009 March 0 Figure - National data from the NHSBT Potential Donor Audit for donation after circulatory death, Oct 009 March

3 INTRODUCTION. The purpose of this paper is to pull together data related to organ donation and transplantation within the Black, Asian and Minority Ethnic (BAME) communities in the UK and to highlight issues it raises for the future. This paper provides updated data from the 0/ financial year and is an update on the first report published by the NBTA in October 0 (see the previous report here). The paper will be circulated widely to generate discussion about how we can improve organ transplantation within BAME communities. It will also be used in the implementation of the new national strategy, Taking Organ Donation to 00, published by the four Governments in July 0 (see the strategy here).. We have used relevant data which is available from NHS Blood and Transplant (NHSBT) and the Office for National Statistics. Where appropriate, data is provided between March 008 and March 0, covering the first five years of the implementation of the Organ Donation Task Force recommendations.. Data analysed include registrants on the Organ Donor Register (ODR), deceased/ living organ donors, transplant recipients, patients on the transplant lists, waiting times to transplant and trends in relation to potential organ donors including family consent rates. The categories currently used to collect data on ethnicity are not consistent and the paper sets out as much detail as possible. 4. We are most grateful to Rachel Johnson from NHSBT for all her support in the preparation of this report and for providing the data.

4 ORGAN DONOR REGISTER (ODR) 5. The primary sources of ODR registrations are the DVLA (58% in 0/), GP registration (%), NHSBT s online system (8%) and the Boots Advantage card (6%). Other sources, including the forms provided by NHSBT for registration accounted for the remaining 7% of registrations last year. 6. Most sources of registration on to the ODR do not have an option to record or report ethnicity and even when it is requested it is unknown how many people do not provide the information. Consequently, only 0% of registrants on the ODR have their ethnicity recorded at present. 7. Figure (Appendix, page 0) shows the number of registrants on the Organ Donor Register up to March The final column of the table shows the percentage increase in the number of registrants in each ethnic group identified between March 008 and March 0. This shows that over the last five years there has been an increase in the number of BAME registrations on the ODR..8% of registrants with ethnicity reported were BAME at the end of March 008, compared with.5% at the end of March 0. The number of White/Black Caribbean (74%), Indian (99%), Pakistani (0%), Bangladeshi (08%), African (9%) and Chinese (8%) registrants on the ODR has increased by over 70% between March 008 and March 0, compared with an increase of 6% overall. 9. While it is estimated that 0.8% of the current UK population is BAME, only.8% of ODR registrants of known ethnicity at March 008 were BAME. This increased to.5% by March 0. An increase is apparent in all those from Mixed backgrounds (.0% to.% overall), in Indians (0.8% to.%), African (0.% to 0.%), Caribbean (0.% to 0.%), other white (.5% to.8%) and Chinese (0.% to 0.%). No increase is seen in the proportion of Pakistani (0.%), Bangladeshi (<0.%), other Asian (0.%), and other black ethnic groups (<0.%). 0. Assuming the proportions are representative of all ODR registrants, it is possible to see differences relative to the current population of the UK (Appendix, Figure, Page ) and the data on percentage of the ODR in 008 and 0 against the percentage of the general population is shown below: Ethnicity 008 % of the ODR* 0 % of the ODR* Mixed race.0..7 Indian Pakistani Bangladeshi <0. < Black Caribbean African Chinese * where ethnicity reported 0 % of the population

5 . The data suggest that Pakistani, Bangladeshi, Black Caribbean and African ethnicities are most poorly represented on the ODR relative to the current UK population.. Issues arising from the analysis: The increase in the number of those on the ODR from BAME background is welcome and NHSBT as well as the BAME communities and charities involved in this work since 008 should be congratulated on what has been achieved so far. These increases vary considerably when broken down by different ethnic groups. There was an overall increase in the ODR from 4.4 million to 9.5 million over the five years. In comparison with the size of the BAME population there have been increases in the proportions from certain ethnic groups: Mixed, Indian, African, Black Caribbean and Chinese backgrounds, while there is no similar change in the proportion of registrants from Pakistani and Bangladeshi backgrounds. Reasons for these differences should be considered carefully and the strategy for increasing registrants from BAME background should be urgently reviewed. The inconsistency in the collection of data by ethnicity for the ODR should be addressed. NHSBT are reviewing the ODR in light of the decision made by the Wales Assembly to introduce opt out arrangements from 05 and this review should include how we can improve the collection of data on ethnicity. We do not collect any data on religion which is an important issue related to organ donation and transplantation for many within the BAME communities. This needs to be considered as part of the review mentioned above. Future projections of population for the UK suggest that the BAME communities will increase from around 0% of the population in 0 to around 0% in 05 (Appendix, Page ). The demand for organs will also increase in the future and the implementation plans for Transplant 00 by the four Governments should take proper account of this. 4

6 DECEASED ORGAN DONORS, TRANSPLANT RECIPIENTS AND TRANSPLANT WAITING LIST PATIENTS. The ethnicity of deceased organ donors and recipients in 007/08, 008/09, 009/0, 00/, 0/ and 0/ and patients on the transplant list at March each year are shown in Figures to 6 (Appendix, Pages to 5) for each organ group. Data capture does not allow for a more detailed breakdown of ethnicity. 4. Overall, there has been little change in the number of BAME donors after death over the last five years (50 BAME kidney donors in 0/), compared to a significant increase in the number of white donors. The number of recipients from BAME background has gone up more notably (over 80% increase in kidney transplants to 45 in 0/) as has the number of patients from BAME background on the transplant waiting list (up % to 889 on the kidney transplant list). 5. Around 96% of kidney donors are white and this has remained constant over the last six years. There has been an increase in the proportion of BAME patients registered for a kidney transplant: 4% in 007/08 compared with 0% in 0/. There has been an increase in the proportion of BAME patients receiving a transplant between 007/08 (7% of all transplants) and 0/ (4% of all transplants) reflecting the increasing numbers on the waiting list. 6. There has been no increase in BAME pancreas donation, while the proportion on the waiting list has increased from 7% to % and BAME transplant recipients have increased from 7% of all pancreas transplants to %. Cardiothoracic donors and recipients have maintained a similar proportion of BAME individuals over the last six years with 4-9% of donors, transplant recipients and waiting list patients coming from an ethnic minority background. 7. Around 95% of liver donors are white and this has remained constant over the last six years. There has been a small decrease in the proportion of BAME transplant recipients from 7% in 007/08 to 5% in 0/. The proportion of BAME patients registered on the liver transplant list has remained constant at approximately 7% over the last six years. 8. Median waiting times (in months) are provided for adult and paediatric patients for each organ where possible (Appendix, Figure 7, Page 6). This shows the longer waiting times for minority patients to receive a kidney transplant although it should be noted that these times are not risk-adjusted for other influential factors and thus should be interpreted with some caution. For most other organ transplants the small number of minority ethnic patients registered does not lead to meaningful estimates of waiting times. 5

7 9. Issues arising from the analysis: There has been little change in the number of deceased donors from BAME background over the last five years ( 50 per year). The work undertaken with potential BAME donors and their families should be reviewed and examples of best practice be promoted throughout the country. Support and training for Specialist Nurses for Organ Donation (SNODs) in providing effective services to BAME communities should be explored, particularly in areas with significant BAME populations. Funding for piloting different ways in which SNODs can be supported should be explored. More SNODs from BAME background should be recruited by NHSBT. The number of transplant recipients from BAME background over the last five years has significantly gone up; this is welcome. However, a recent report from the London Specialised Commissioning Group (Audit of Equity of Access to Renal Transplantation, May 0) shows that ethnicity is a factor that impacts on a patient s ability to access transplantation services. The findings of this report should be considered carefully by the NHS England, hospitals and NHSBT in determining transplantation services for the future. The increase in the number of patients from BAME background on the transplant waiting list over the last five years (the % of patients from BAME background waiting for a kidney has gone up from 4% in 008 to 0% in 0) clearly indicates that without addressing the BAME issues, we are not going to be able to match world class performance in organ donation and transplantation which is the aim of the Transplant 00 strategy agreed by the four Governments. The median waiting times for an organ by patients from BAME background are longer (for kidneys, BAME patients have a median waiting time of nearly 4 years compared to years for white patients). It is clear that the implementation of the Organ Donation Task Force recommendations has had limited impact on this key indicator and the implementation of the Transplant 00 strategy should address this issue. 6

8 LIVING DONORS AND RECIPIENTS 0. The ethnicities of living organ donors and recipients in 007/08, 008/09, 009/0, 00/, 0/ and 0/ are shown in the Appendix, Figure 8, Page 7.. The majority of these are kidney donors and recipients and compared with earlier figures for deceased donors and their recipients; there are more BAME donors but fewer BAME living donor recipients (% for deceased donor recipients, 7% for living donor recipients, 0/).. Issues arising from the analysis: The increase in the number of living donors from BAME background (for example from 40 Asian donors in 008 to 88 in 0) is welcome. The data does not tell us enough about the ethnic category of the donors, other than Black or Asian. Further work on identifying the ethnicity should be undertaken so that we can find out reasons for this increase. It would be helpful to know more about religious barriers to live organ donation and to know if the work done by some BAME communities in raising awareness has had an impact on the number of live donations. 7

9 POTENTIAL DONORS. NHS Blood and Transplant (NHSBT) capture information about potential organ donors through the Potential Donor Audit (PDA). This audit provides information about the pathway to donation and identifies the steps at which potential organ donors do not proceed to donation. All data shown in this section use the following definitions: Potential donors after brain death (DBD) are defined as patients for whom death was confirmed following neurological tests and who had no absolute or relative medical contraindications to solid organ donation. Potential donors after circulatory death (DCD) are defined as patients for whom imminent death was anticipated and treatment was withdrawn and who had no absolute or relative medical contraindications to solid organ donation. The brain death testing rate is the proportion of patients in whom neurological death was suspected who were tested (DBD donors only). The referral rate is the percentage of patients for whom neurological death was suspected, or imminent death was anticipated, that were discussed with the Specialist Nurse - Organ Donation (SN-OD). The approach rate is the percentage of potential donor families approached for consent to/authorisation for donation. The consent/authorisation rate is the percentage of potential donor families approached about donation that consented to/authorised donation. 4. Figure 9 in the Appendix (page 8) shows the testing rate, referral rate, approach rate and consent rate over time for white and BAME potential organ donors. These are based on data presented in Figures 0 and (pages 0 and ) for donation after brain death and for donation after circulatory death. 5. There are no differences for white and BAME potential donors in terms of brain stem death testing or referral to a SNOD. Over the last four years, the brain stem death testing rate overall has not changed, while there has been an increase in the referral of BAME potential DCD donors to a SNOD (from around 40% to 64%), in line with the increase for potential white DCD donors. 6. The data shows that families of BAME potential donors are slightly less likely to be approached about donation. If they are approached, the consent rate for BAME potential donors is approximately half that for families of white potential donors (0% for DBD BAME donors and 5% for DCD donors). Overall, consent rates have not increased for white or BAME potential donors in the last 5 years. 7. Issues arising from the analysis: The increase in the referral of BAME potential donors to SNODs is welcome, as is the increase in the approach rate to BAME families. However, this has made little overall difference to the consent rate from BAME families. SNODs need to have a good understanding of the issues which are important to BAME potential donors and their families. The suggestions made above in paragraph 9 apply to this section. The NBTA welcomes the priority given to improving consent in the Transplant 00 strategy. 8

10 CONCLUSION 8. The NBTA welcomes the increase in the number of BAME registrations on the Organ Donor Register and the increase in the number of BAME live transplants. However, BAME groups are still under-represented on the ODR compared with the UK population and the consent rate for donation is low among BAME families. This issue is compounded as patients from a BAME background are over-represented on the kidney and liver transplant waiting lists and waiting times to kidney transplant are longer for BAME patients than white patients. With the projected increase in BAME communities in future years, further action needs to be taken now to increase organ donation and transplantation from BAME communities. The NBTA is ready to work closely with NHSBT and the representatives of the four Governments to develop a strategic approach to meet these challenges. 9. The analysis of the data has shown that organ donation rates vary considerably when broken down by different ethnic groups and that the inconsistency in the collection of data by ethnicity for ODR registrants and actual organ donors and recipients should be reviewed. There has been little change in the number of deceased donors from BAME background and the work undertaken with potential BAME donors and their families should be reviewed and examples for best practise be promoted throughout the country. 0. The NBTA recommends that the issues outlined in this report are considered and welcomes the opportunity to work in partnership to address them.. Any comments or queries about this report should be sent to Kirit Modi, Joint Chair of NBTA, at nbta@dh.gsi.gov.uk 9

11 Appendix Figure - Ethnicity of ODR registrants at March 0, as recorded by NHS Blood and Transplant -Mar-08 -Mar-09 -Mar-0 -Mar- -Mar- -Mar- % increase, N % N % N % N % N % N % White Mixed Asian Black British,49, ,66, ,878,86 9.,000,04 9.0,8, ,609, % Irish 5, , , ,77. 7,586. 8,6. 58% Other 65,96.5 7, ,6.7 89, , , % Total,57,4 97.,757,77 97.,07, ,57,5 96.8,08, ,800, % White/Black Caribbean 8, , ,468 0.,5 0.,00 0.4, % White/Black African, ,0 0. 4, , , , % White/Asian 8, ,879 0., 0.4,07 0.4, , % Other 6, , , , , , % Total 6, ,880. 4,557. 6,867. 9,94. 45,87. 70% Indian, , , ,56.0 7,45. 4,56. 99% Pakistani,4 0.,69 0.,6 0., , 0. 4, % Bangladeshi ,04 0.0, % Other 5, , , ,4 0. 8, , % Total 9,8.,666. 9,69. 4,069. 5, , % Caribbean 5, , , , , , % African,76 0.,8 0., , ,9 0. 6,4 0. 9% Other ,05 0.0,4 0.0,56 0.0, % Total 9, ,00 0.4,98 0.4, , , % Chinese,404 0., , , ,5 0. 6,4 0. 8% Other 4, , , ,7 0. 6, , % Not Reported (% not reported),79,805 (8.8),570,8 (8.5),46,87 (8.) 4,46,77 (8.4) 5,67,85 (8.7) 5,545,7 (79.8) % TOTAL 4,50,64 5,40,490 6,586,60 7,508,687 8,694,60 9,48,85 6% Number of registrants on the ODR at the end of the financial year of those that are still registered at March 0 Number of registrants on the ODR at the end of the financial year of those that are still registered at March 0 % of reported 0

12 Figure - UK population by ethnicity, mid-0 estimates (thousands) and projections Ethnicity N % White British White Irish 59.4 Other White Total white Indian 48. Pakistani 04.6 Bangladeshi Other Asian Total Asian 4 5. Black Caribbean Black African 79. Other Black 0 0. Total black 57.5 White & Black Caribbean White & Black African 4 0. White and Asian Other Mixed Chinese Other Ethnic Total other 00. TOTAL Source Office for National Statistics The University of Leeds have produced some projections which suggest that ethnic minorities will make up a fifth of Britain's population by 05, compared with 8% in 00. Their Key projections for 05 are as follows: UK population could reach almost 78 million (59 million in 00) White British, White Irish and Black Caribbean groups to experience slowest growth Other White (Australia, US and Europe) and Mixed to experience the biggest growth Ethnic minority share of the population to increase from 8% (00) to around 0% Ethnic minorities to shift from deprived local authorities to more affluent areas Ethnic groups to be significantly less segregated from the rest of the population Rees PH; Wohland P; Norman P; Boden P (0) Ethnic population projections for the UK, , Journal of Population Research

13 Figure - Kidney statistics, April 007 March 0 00% 80% % 40% Other Black Asian White 0% 0% 007/08 008/09 009/0 00/ 0/0/ 007/08 008/09 009/0 00/ 0/ 0/ 007/08 008/09009/0 00/ 0/ 0/ Donors Transplant recipients Waiting list patients Other Black Asian White Source UK Transplant Registry held by NHS Blood and Transplant

14 Figure 4 - Pancreas and kidney/ pancreas statistics, April 007 March 0 00% % 60% 40% Other Black Asian White 0% 0% 007/08 008/09 009/0 00/ 0/ 0/ 007/08 008/09 009/0 00/ 0/ 0/ 007/08 008/09 009/0 00/ 0/ 0/ Donors Transplant recipients Waiting list patients Other Black Asian White Source UK Transplant Registry held by NHS Blood and Transplant

15 Figure 5 - Cardiothoracic statistics, April 007 March 0 00% % 60% Other 40% Black Asian White 0% 0% 007/08 008/09 009/0 00/ 0/ 0/ 007/08 008/09 009/0 00/0/ 0/ 007/08 008/09 009/0 00/ 0/ 0/ Donors Transplant recipients Waiting list patients Other Black Asian White Source UK Transplant Registry held by NHS Blood and Transplant 4

16 Figure 6 - Liver statistics, April 007 March 0 00% 90% 80% % 60% Other 50% 40% Black Asian White 0% 0% 0% 0% 007/08 008/09 009/000/ 0/ 0/ 007/08008/09 009/0 00/ 0/ 0/007/08 008/09 009/0 00/0/ 0/ Donors Transplant recipients Waiting list patients Other Black Asian White Source UK Transplant Registry held by NHS Blood and Transplant 5

17 Figure 7 - Median waiting time to transplant in the UK Ethnicity Number of patients Waiting time (months) registered Median 95% Confidence interval Adult kidney White Asian Black Other TOTAL Paediatric kidney White Asian Black 9-6 Other TOTAL Adult pancreas White 08 - Asian Black Other TOTAL 08 - Adult non-urgent heart White Asian Black Other TOTAL Paediatric non-urgent heart Adult lung White Asian 0-6 Black Other TOTAL Adult liver White Asian Black Other TOTAL Paediatric liver 06 - Median waiting time not reported for fewer than 0 patients Patients registered April 006 March 00 Patients registered April 007 March 0 Patients registered April 008 March 0 Source - UK Transplant Registry held by NHS Blood and Transplant, published at 6

18 Figure 8 - Living donors and transplant recipients, April 007 March 0 00% 90% 80% % 60% 50% 40% Other Black Asian White 0% 0% 0% 0% 007/08 008/09 009/0 00/ 0/ 0/ 007/08 008/09 009/0 00/ 0/00/ Donors Transplant recipients Other Black Asian White Kidney Liver

19 % of patients meeting referral criteria % of patients meeting referral criteria Figure 9 - NHSBT Potential Donor Audit data, April 009 March 0 Brain stem death testing rate (DBD only) White, DBD BAME, DBD Oct 09 - Mar 0 Apr 0 - Sep 0 Oct 0 - Mar Apr - Sep Oct - Mar April - Sep Oct - Mar Ethnicity is not known for 8/5748 possible DBD donors (neurological death suspected) Referral rate to Specialist Nurse White, DBD BAME, DBD White, DCD BAME, DCD 0 Oct 09 - Mar 0 Apr 0 - Sep 0 Oct 0 - Mar Apr - Sep Oct - Mar Apr - Sep Oct - Mar Ethnicity is not known for 8/5748 possible DBD donors (neurological death suspected) Ethnicity is not known for 7/48 possible DCD donors (imminent death anticipated) 8

20 % of approaches to patient families % of patients who were referred for donation Family approach rate White, DBD BAME, DBD White, DCD BAME, DCD 0 Oct 09 - Mar 0 Apr 0 - Sep 0 Oct 0 - Mar Apr - Sep Oct - Mar Apr - Sep Oct - Mar Ethnicity is not known for 04/406 potential DBD donors Ethnicity is not known for 46/0555 potential DCD donors Family consent rate White, DBD BAME, DBD White, DCD BAME, DCD Oct 09 - Mar 0 Apr 0 - Sep 0 Oct 0 - Mar Apr - Sep Oct - Mar Apr - Sep Oct - Mar Ethnicity is not known for 86/764 potential DBD donor families who were approached Ethnicity is not known for 98/5 potential DCD donor families who were approached 9

21 Figure 0 - National data from the NHSBT Potential Donor Audit for donation after brain death, Oct 009 March 0. Note that patients aged 76 years and over and cardiothoracic ICUs are not audited. Deaths in Emergency Departments included from April 00. Period Ethnic origin Number of patients w here neurological death w as suspected Number of patients that w ere tested Neurological death testing rate (%) Number of patients w here neurological death w as suspected that w ere referred to SN-OD DBD referral rate (%) Number of potential DBD donors (Death confirmed by neurological tests and no absolute or relative contraindications to solid organ donation) Number of potential DBD donors w hose family w ere approached DBD approach rate (%) Number of families consenting to donation Oct 09 - Mar 0 White BAME Unknow n Apr 0 - Sep 0 White BAME Unknow n Oct 0 - Mar White BAME Unknow n Apr - Sep White BAME Unknow n Oct - Mar White BAME Unknow n Apr - Sep White BAME Unknow n Oct - Mar White BAME Unknow n DBD consent rate (%) 0

22 Figure - National data from the NHSBT Potential Donor Audit for donation after circulatory death, Oct 009 March 0. Note that patients aged 76 years and over and cardiothoracic ICUs are not audited. Deaths in Emergency Departments included from April 00. Number of patients for w hom imminent death w as anticipated Number of patients for w hom imminent death w as anticipated that w ere referred to SN- OD DCD referral rate (%) Number of potential DCD donors (Imminent death anticipated and treatment w ithdraw n w ith no absolute or relative contraindications) Number of potential DCD donors w hose family w ere approached DCD approach rate (%) Number of families consenting to donation period Ethnic origin Oct 09 - Mar 0 White BAME Unknow n Apr 0 - Sep 0 White BAME Unknow n Oct 0 - Mar White BAME Unknow n Apr - Sep White BAME Unknow n Oct - Mar White BAME Unknow n Apr - Sep White BAME Unknow n Oct - Mar White BAME Unknow n DCD consent rate (%)