Organ donation and transplantation

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1 Special Eurobarometer 333a European Commission Organ donation and transplantation Fieldwork: October 2009 Publication: June 2010 Special Eurobarometer 333a / Wave TNS Opinion & Social This survey was requested by the Directorate-General Health and Consumers and coordinated by the Directorate-General for Communication ( Research and Speechwriting Unit) This document does not represent the point of view of the European Commission. The interpretations and opinions contained in it are solely those of the authors.

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3 Eurobarometer Organ donation and transplantation Conducted by TNS Opinion & Social at the request of Directorate General Health and Consumers Survey co-ordinated by Directorate General Communication TNS Opinion & Social Avenue Herrmann Debroux, Brussels Belgium - 2 -

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5 Table of contents INTRODUCTION FAMILY DISCUSSIONS REGULATION OF ORGAN DONATION AND TRANSPLANTATION DONATING ONE S OWN ORGANS DONATING AN ORGAN FROM A DECEASED CLOSE FAMILY MEMBER REASONS FOR NOT DONATING ORGANS...26 CONCLUSIONS...29 ANNEX TECHNICAL SPECIFICATIONS QUESTIONNAIRE TABLES - 3 -

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7 INTRODUCTION The therapeutic use of human substances, including the transplantation of organs, is an integral part of modern health systems and vital to the management of serious health conditions throughout Europe. Organ transplantation has been used successfully to treat serious health conditions since Because of the success of this treatment, demand for organs continues to exceed the number of donors, at an accelerating rate. In this context of accelerating demand, it is important that efforts to increase the number of organ donors are accompanied by high quality and safety standards. Improvement in the efficiency and accessibility of transplantation systems is also key. In 2008 the European Commission adopted a proposal for a Directive on standards of quality and safety of human organs intended for transplantation 1. At the same time, the Commission launched an Action Plan 2 designed to the promote the availability of deceased and living donors across the European Union, increase the supply of organs, enhance transplantation systems and ensure the quality and safety of procedures. The Action Plan includes a number of priorities including the improvement of knowledge and communication regarding organ donation and transplantation issues, both among health professionals and the general public. The following Eurobarometer findings highlight current attitudes in this area. This Eurobarometer survey includes questions on behaviours and attitudes in relation to organ donation and transplantation. It is based on a Eurobarometer survey of 26,788 European citizens carried out in October 2009 in the 27 European Union Member States, as well as 3,504 interviews in the candidate countries (Croatia, Turkey and the Former Yugoslav Republic of Macedonia) and the Turkish Cypriot Community 3. The latest research on organ donation and transplantation was preceded by two previous Eurobarometer on this subject, the first in 2002 within the then 15 European 1 Proposal for a Directive of the European Parliament and of the Council on standards of quality and safety of human organs intended for transplantation (December 2008) 2 Commission of the European Communities Action Plan on Organ Donation and Transplantation ( ): Strengthened Cooperation Between Member States. 3 Further information on the methodology used can be found in the technical note which specifies the interview methods as well as the intervals of confidence

8 Union Member States 4, and the second in 2006 within the enlarged Union of 25 Member States 5. **** This Eurobarometer survey was commissioned by the European Commission's Directorate General SANCO. It was carried out by the TNS Opinion & Social network between 2 October and 19 October The methodology used is that of Special Eurobarometer surveys as carried out by Directorate General for Communication ( Research and Speechwriting Unit) 6. A technical note on the methodology for interviews conducted by the institutes within the TNS Opinion & Social network is annexed to this report. This note indicates the interview methods and the confidence intervals 7. The Eurobarometer web site can be consulted at the following address: We would like to take the opportunity to thank all the respondents across the continent who have given their time to take part in this survey. Without their active participation, this study would not have been possible. 4 October-December Interviews for the 2006 Eurobarometer on Organ Donation and Transplantation were conducted between 6 October and 8 November 2006 among 28,584 people in the 25 Member States, 2 accession states and the Turkish Cypriot Community The results tables are included in the annex. It should be noted that the total of the percentages in the tables of this report may exceed 100% when the respondent can give several answers to the same question

9 In this report, the countries are represented by their official abbreviations. The abbreviations used in this report correspond to: ABBREVIATIONS EU27 DK/NA BE BG CZ DK D-E DE D-W EE EL ES FR IE IT CY CY (tcc) LT LV LU HU MT NL AT PL PT RO SI SK FI SE UK HR TR MK** European Union 27 Member States Don t know / No answer Belgium Bulgaria Czech Republic Denmark East Germany Germany West Germany Estonia Greece Spain France Ireland Italy Republic of Cyprus* Area not controlled by the government of the Republic of Cyprus Lithuania Latvia Luxembourg Hungary Malta The Netherlands Austria Poland Portugal Romania Slovenia Slovakia Finland Sweden The United Kingdom Croatia Turkey The Former Yugoslav Republic of Macedonia *Cyprus as a whole is one of the 27 European Union Member States. However, the acquis communautaire is suspended in the part of the country that is not controlled by the government of the Republic of Cyprus. For practical reasons, only the interviews conducted in the part of the country controlled by the government of the Republic of Cyprus are recorded in the category CY and included in the EU27 average. The interviews conducted in the part of the country not controlled by the government of the Republic of Cyprus are recorded in the category CY(tcc) [tcc: Turkish Cypriot Community]. ** Provisional code which does not prejudge in any way the definitive nomenclature for this country, which will be agreed following the conclusion of negotiations currently taking place at the United Nations

10 1. FAMILY DISCUSSIONS - Four out of ten Europeans have already discussed the issue of organ donations and transplantations with their family - Some 40% of Europeans have raised the issue of organ donation and transplantation with their family, compared to 59% who have never broached this subject 8. This percentage is very similar to that recorded in 2006, when 41% of European Union citizens (at that time composed of 25 countries) had discussed the issue with their family. QE1 Have you ever discussed human organ donation or transplantation with your family? - % 58.2 Oct.-Dec Oct.-Nov October 2009 EU15 EU25 EU15 NMS10 EU27 EU15 NMS12 Yes 46% 41% 44% 25% 40% 44% 27% No 52% 58% 55% 73% 59% 56% 72% Don't know 2% 1% 1% 2% 1% 0% 1% Despite the fact that levels of discussion of this topic in 2009 are consistent with those reported in 2006, an analysis by country reveals a continued disparity between results for the oldest EU Member States and the most recent ones, with the latter generally recording lower scores for this question. As seen in 2006, in the October 2009 wave there are significant differences in levels recorded among countries that joined the European Union before 2004: Dutch respondents continue to report the highest levels of discussion (74%), followed by those in Sweden (62%), while interviewees in Portugal report low levels of discussion (25%), as do those in Greece (32%). Notable in 2009 is the fact that the proportion of respondents in the United Kingdom and in Finland who report discussing this topic with their family has dropped respectively from 43% to 37% and 47% to 41%. By contrast there have been significant increases in levels of discussion in Italy (45% up from 39% in 2006) and Austria (37% up from 24% in 2006). Of the countries that joined the European Union after 2004, Malta continues to stand out as the only new Member State to record a score for organ donation family 8 QE1 Have you ever discussed human organ donation or transplantation with your family? - 7 -

11 discussions in line with the European average (40%). All other recent Member States record levels below the European average. There were, however, notable increases in discussion levels in Slovenia (35% in 2009, up from 30% in 2006), and the Republic of Cyprus (33% in 2009 up from 19% in 2006). The lowest (and declining) levels of discussion are recorded among respondents in Latvia, Estonia and the Czech Republic (15%, 17% and 18% respectively). Results for this question in the three candidate states, Croatia, Turkey and the Former Yugoslav Republic of Macedonia, are all in the lower range (25%, 21% and 19% respectively), as are those in the Turkish Cypriot Community (19%)

12 A socio-demographic analysis also reveals significant differences: Starting with gender: 44% of women said that they had discussed this subject with their family compared to 36% of men. Age is also a criterion that creates important differences: people aged between 25 and 54 are the most likely to discuss this topic with their family (43% of year olds and 45% of year olds), while those aged are the least likely to broach the subject (33%). Interestingly, the oldest age group, those aged 55 and over, remain less likely than average to discuss this topic with their family (37%). Occupational and educational skews are quite striking: discussion of the topic increases significantly with education level (53% of those who have studied up to or beyond the age of 20 compared to 32% of those who left school at age 15 or earlier) and is more prevalent among people in managerial jobs (59%) than among unemployed people (31%), the retired (35%), students (36%) or manual workers (39%). A more in-depth analysis of age by education reveals that the lower levels of discussion among the older age groups and retired people is to a degree related to their overall lower education levels. Europeans over the age of 55 are more likely to have left school at age 15 or earlier compared to the European average for this level of education. Similarly, it is no coincidence that both people in managerial positions and those with higher education levels are more likely than average to discuss organ donation with their families, as the two factors are intertwined. Europeans in managerial positions are more likely to have higher education. The key discriminator for this question is, thus, education. Finally, financial hardship and social positioning are factors which influence discussion levels. Respondents who have difficulty paying bills most of the time are significantly less likely to discuss organ donation with their families, compared to those who hardly ever experience this difficulty (31% compared to 43%), and people who rank themselves lower on the social hierarchy are less - 9 -

13 likely to broach this subject than those who give themselves a high ranking (33% compared to 46%)

14 2. REGULATION OF ORGAN DONATION AND TRANSPLANTATION - Just under three in ten Europeans know the regulations in their country for the donation and transplantation of human organs - Some 28% of Europeans are aware of laws governing the donation and transplantation of organs in their country, it appears from a new question added in By contrast, 68% of people surveyed said they did not know such laws, and 4% could not answer this question. QE2 The donation and transplantation of human organs is regulated by (NATIONALITY) law. Do you know the regulations in (OUR COUNTRY) for the donation and transplantation of human organs? - % October 2009 EU27 EU15 NMS12 Yes 28% 30% 21% No 68% 67% 73% Don't know 4% 3% 6% A geographical analysis of results reveals significant differences by country, with a general pattern of higher awareness levels in the oldest European Union Member States and lower levels in the most recent ones. The highest awareness level of laws relating to organ donation is noted in the Netherlands (64%) followed by Denmark (45%). Most other countries which joined the European Union before 2004 record awareness levels in the 20% to 40% range, the exceptions being Greece and Austria, where levels are considerably lower (14% and 19% respectively). The lowest awareness levels are noted in the Czech Republic and Estonia (10% and 8% respectively), followed by Latvia and Bulgaria (both 15%). Slovakia and Romania also report awareness levels in the lower range (16% and 18% respectively). 9 QE2 The donation and transplantation of human organs is regulated by (NATIONALITY) law. Do you know the regulations in (OUR COUNTRY) for the donation and transplantation of human organs?

15 While two of the three candidate states, Turkey and the Former Yugoslav Republic of Macedonia report awareness levels in the lower range (both 18%) the other candidate state, Croatia, falls within the average European range (32%). The awareness level of the Turkish Cypriot Community is quite low (15%)

16 A socio-demographic analysis of awareness of laws governing organ donation and transplantation in Europe reveals the following: No significant differences by gender and only minimal ones by age: a slightly higher than average percentage of year olds (33%) reported awareness of such laws. Education is a key differentiator in terms of response to this question, with 40% of Europeans educated to 20 years of age or later recording knowledge of organ donation laws in their country. By contrast, only 21% of respondents who left school at age 15 or earlier are aware of such laws. Occupation also plays a role here: 41% of people in managerial positions are aware of the laws, compared to only 26% of the retired or those taking care of the home, 25% of manual workers, 24% of students and 19% of unemployed people. As noted in section 1.2 of this report, in relation to family discussion of organ donation, education as a factor is correlated with results by age and occupation: in this case education drives higher levels of awareness of organ donation laws among people in managerial jobs and those under 55 years of age. Also noted in section 1.2 was the observation that respondents experiencing financial hardship and those who rank themselves lower on the social hierarchy are less likely to discuss organ donation with their family. These groups are also less likely to be aware of laws on this subject in their country. Only 20% of people who report having difficulty paying their bills most of the time (and the same percentage of people ranking themselves lower on the social ladder) report awareness of organ donation laws. By contrast, 30% of people who hardly ever experience financial hardship, and 35% of people who position themselves higher on the social ladder, report awareness of such laws. There is a strong association between family discussion and knowledge of laws. Of those who have discussed organ donation and transplantation with their family, nearly half (48%) say they know the laws governing this area in their country

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18 3. DONATING ONE S OWN ORGANS - The majority of Europeans are willing to donate one of their own organs after their death - Some 55% of Europeans are willing to donate one of their organs to an organ donation service immediately after their death 10. This proportion is in line with that recorded in 2006 (56%). Just over one in four is against the idea (27%), while almost one in five felt unable to express an opinion on the topic (18%). In line with the results of the question on family discussions, the lower than average levels of willingness noted in new Member States is compensated by stable to increasing levels of willingness in most other parts of Europe. QE3 Would you be willing to donate one of your organs to an organ donation service immediately after your death? - % 58.2 Oct.-Dec Oct.-Nov October 2009 EU15 EU25 EU15 NMS10 EU27 EU15 NMS12 Yes 59% 56% 57% 50% 55% 57% 46% No 22% 26% 25% 31% 27% 26% 31% Don't know 19% 18% 18% 19% 18% 17% 23% An analysis of results by country reveals some significant differences. Continuing the pattern observed in 2006, respondents in Northern European countries show a higher willingness to donate their own organs. The strongest support is noted once again in Sweden (83%), while high levels are recorded in Finland and Belgium (both 72%) and Denmark (70%). The exception to this geographical skew is, once again, Malta where support for organ donation is unusually high and 77% of people are willing to donate their own organs. There has been a slight drop in support for organ donation in the Netherlands in this latest Eurobarometer (64% compared to 69% in 2006). At the other end of the scale, those most reluctant to donate their own organs tend to reside in Eastern European countries, especially Latvia where the majority of people (52%) say no to this question, and Romania (31% saying yes compared with 40% saying no ). In the Czech Republic, opinion is quite divided, 45% of respondents 10 QE3 Would you be willing to donate one of your organs to an organ donation service immediately after your death?

19 saying yes and 37% saying no ). Bulgaria also records one of the lowest levels of support for organ donation (42% for and 27% against). In Greece and Austria, interviewees are also divided on this matter (43% saying yes and 38% no in Greece and 39% saying yes and 41% no in Austria). It should be noted that the support levels for organ donation have dropped by 10 points in Greece (53% in 2006). Of the candidate countries, Croatia reports average levels of support (53%) while scores in Turkey and the Former Yugoslav Republic of Macedonia are in the lower range (32% and 26% respectively). The most notable increases in willingness to donate one s own organs from 2006 to 2009 are recorded in Italy, Spain and Romania (4 points), the Republic of Cyprus and Austria (6 points)

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21 An in-depth socio-demographic analysis does not reveal any significant differences according to either the gender or age of interviewees. As noted in 2006, only people aged 55 and over stand out: the percentage of this group willing to donate one of their own organs after death is lower than the European average (49% compared to the 55% EU27 average). Significant relationships are, however, noted between willingness to donate one s own organs, education level and occupation. In line with 2006 results, people educated to age 20 or later are significantly more likely to support organ donation (65%) than people who have left school at age 15 or earlier (45%). Once again, just over one third of people who left school at age 15 or earlier (35%) say they are unwilling to donate one of their own organs after death, compared to only 18% of those educated to age 20 or later. Those in managerial jobs are more likely to show willingness to donate one of their own organs than those looking after the home or unemployed people (68% compared to 50% and 49% respectively). As was the case with family discussion and awareness of laws about organ donation, a more in-depth analysis of age by education and occupation levels reveals that the lesser willingness to donate one s own organs among the older age groups and retired people is to a degree related to their education level, as is the greater willingness among people in managerial jobs. Also as noted previously, financial hardship and self-described social position are key discriminators when it comes to attitudes relating to organ donation. Those who report having difficulty paying bills most of the time are significantly less likely to consent to donate one of their own organs after death than are respondents who hardly ever experience this difficulty (48% compared to 58%). Similarly, respondents who rank themselves lower on the social ladder are significantly less likely to consent than those who give themselves a higher social ranking (49% compared to 59%)

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23 - The fact that respondents have already discussed this subject with their family has a strong influence on their willingness to donate one of their own organs As noted in 2006, discussion of the issue of organ donation and transplantation with one s family has a strong association with willingness to donate one s own organs after death. Of those who have discussed the topic with their family, 76% are willing to donate their own organs. Discussion is clearly a stronger differentiator in this area than socio-demographic factors (education aside). Further, people s understanding of the laws governing organ donation is noted in 2009 as another key differentiator of support for organ donation. Of those who are aware of the laws governing organ donation in Europe, a large percentage (77%) say they are willing to donate their own organs after death. Therefore, following a trend observed in 2006, the latest results are encouraging as they point to the possibility of increasing the levels of support for organ donation in the European Union via communication campaigns which encourage more open discussion of the topic and better understanding of laws surrounding it. These activities should be focused on, but not limited to, recent European Union Member States that record low levels of both family discussion and education

24 4. DONATING AN ORGAN FROM A DECEASED CLOSE FAMILY MEMBER - The majority of Europeans are not only willing to donate one of their own organs after their death, they would also agree to donate an organ from a deceased close family member Over half of Europeans (53%) would agree to donate an organ from a deceased close family member if asked in a hospital 11. From 2002 to 2006 a significant evolution in European opinion on this particular question was noted: the proportion of people who said they would give their consent increased by 8 points (from 46% to 54%) over that period. In 2009, the higher level of consent has been maintained, with only 1 point difference in the yes responses. Don t know responses have also been maintained (22% in 2009 compared to 23% in 2006). A similar result is noted in 2009, compared to 2006, in regard to the no answers for the two organ donation questions (consent to donate one s own organs after death and consent to donate an organ from a deceased close family member). While the percentage of people willing to donate their own organs is slightly higher than the percentage of those willing to donate organs from a deceased close family member (55% versus 53%), the opposite is true for refusals. The percentage of those who would refuse consent for donation of their own organs is once again slightly higher than the percentage of those who would refuse consent for donation of an organ from a deceased close family member (27% versus 25%). Finally, in regard to the difficulty of making a decision on donating one s own organs or those of a deceased close family member, the results are similar to those seen in Once again, the proportion of don t know responses for the former is lower than the latter (18% versus 22%), suggesting less confusion about making this decision for oneself than on behalf of others. 11 QE4 If you were asked in a hospital to donate an organ from a deceased close family member, would you agree?

25 Not surprisingly, the countries with the highest levels of consent for donation of the organs of a deceased close family member continue to be, in 2009, the same countries where high levels of consent for donation of one s own organ are noted. Sweden (73%) and Finland (72%) remain the top two pre-2004 EU countries in terms of consent levels, recording scores very similar to those seen in 2006 (74% and 73% respectively). Of note in 2009 is the fact that the Netherlands has dropped from third place in consent levels (62% down from 66% in 2006), a pattern similar to that seen in section 1.4 regarding willingness to donate one s own organs. Malta continues to stand out as the recent European Union Member State with an unusually high level of consent (72%). Among the countries that joined the European Union before 2004, two countries stand out as having support levels for family organ donation below the European average: Austria which has the second lowest level of acceptance at 35% (consistent with the 2006 results), and Greece where acceptance levels dropped significantly from 54% in 2006 to 41% in These two countries aside, the lowest levels of acceptance are noted in one of the new Member States, Romania (34%), Latvia (36%) and the Czech Republic (41%). The three candidate countries, Croatia, Turkey and the Former Yugoslav Republic of Macedonia all report lower than average levels of consent for donation of the organs of deceased close family members (45%, 36% and 32% respectively). The most notable increases in Yes responses to this question from 2006 to 2009 are seen in Italy and in Bulgaria (3 points) and Lithuania (5 points). As noted in 2006, the results in Germany are interesting: while German respondents have levels of family discussion in line with the European average (44%) and higher than countries that joined the European Union before 2004 such as Portugal (25%), Greece (32%), Belgium (36%), the UK and Austria (both 37%), Spain (40%), or

26 Finland (41%), the support for organ donation in Germany (both one s own organs and those of deceased close family members) is considerably lower than average. While family discussions of the topic in Germany show healthy levels, it is interesting that knowledge of laws governing organ donation and transplantation are lower than average in this country. In summary, it appears that encouraging open discussion of this topic alone will not necessarily increase support levels in Germany, and that broader changes in attitudes and increased knowledge of legal issues are required for positive evolution in this score

27 A socio-demographic analysis of responses shows that, in line with response to other questions in this report, education is the strongest socio-demographic discriminator of willingness to donate organs from deceased close family members. Some 64% of people who studied to age 20 or later are willing to donate the organs of deceased close family members, compared to 45% of people who left school age 15 or younger. Following on from this (as education and occupation are intertwined as factors), 67% of people in managerial jobs give a positive response to this question, compared to 50% of people looking after the home, 49% of unemployed people and 48% of the retired. Unemployed people have the highest level of refusal to give consent (30%), and people looking after the home show the highest level of indecision (26% don t know). Just as people who have discussed the topic with their family tend to have higher levels of consent for donation of their own organs, they also have higher levels of consent for donation of the organs of deceased close family members (71% compared to 41% of those who have not had such discussions). Similarly, knowledge and understanding of laws governing organ donation and transplantation play a role in raising levels of consent to donate the organs of others just as it does in relation to one s own organs: 73% of those who were aware of laws in their country on this topic also showed willingness to donate the organs of close family members after their death, compared to only 46% of those not aware of such laws)

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29 5. REASONS FOR NOT DONATING ORGANS - Distrust of the system and fear of manipulation of the human body are the dominant reasons for not donating one s own organs or those of a deceased close family member - Almost a third of Europeans (31%) who are unwilling to donate either their own organs or those of a deceased close family member are unable to give a reason for their reluctance 12. Of the remainder, a quarter (25%) are fearful of manipulation of the human body, and one in five (21%) cite distrust of the system (either the transplantation system, consent system, and/or general social system) as a barrier to donation. Less than one in ten Europeans (7%) do not support organ donation for religious reasons. 12 QE5 If you would be unwilling to donate your own organs or those of a close family member what would these reasons be?

30 When we consider barriers to organ donation on a country level, significant differences are apparent, not necessarily related to region of European Union or number of years as a Member State. One of the candidate countries, Turkey, stands out as the place where respondents are most likely to be reluctant to donate organs for religious reasons (29%). Other countries where respondents are more likely to be reluctant to donate organs for religious reasons (compared to the European average) are Romania (17%), Austria (15%), the Former Yugoslav Republic of Macedonia (12%), and Slovakia (11%). Distrust of the system, on the other hand, is more prevalent as a barrier in Greece (45%), the Czech Republic (33%), Slovakia (31%) and Italy (30%). People in the Czech Republic are also more likely to cite fear of manipulation of the human body as a barrier to donation (45%), as are the citizens of Poland (36%), Latvia (35%), Slovakia and the Republic of Cyprus (both 33%). Confusion about reasons for not donating organs is most prevalent in Malta: of the relatively low proportion of people who do not support organ donation in that country, the majority (76%) say they don t know why. A similarly high proportion of don t know answers is noted in Ireland (64%), Finland (53%), Estonia (52%), and the two newest Member States, Bulgaria and Romania (both 48%)

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