Germany s Campaign to Increase Organ Donation I have nothing to disclose. Christiane Kugler, PhD Witten University, Department of Health, and Hannover Medical School, Hannover, Thoracic Transplant Program, Germany UCSF Transplant 2016: Building Bridges to Excellence San Francisco, September 29-30, 2016 Outline Outline 1. Current condition of organ allocation and transplantation 2. Organ donation decrease 3. Organ donation campaigns 1. Current condition of organ allocation and transplantation 2. Organ donation decrease 3. Organ donation campaigns 1
Current Condition Current Condition Eurotransplant Collaborative Framework To date, eight countries cooperate within Eurotransplant Austria, Belgium, Croatia, Germany, Hungary, Luxemburg, the Netherlands and Slovenia Total population 135 Mill. Inhabitants Int l collaborative framework includes all transplant centers, tissue-typing laboratories and hospitals where organ donations take place Eurotransplant Collaborative Framework One central waiting list 'Pooling' donor organs depending on population and allocation of collaborative countries Eurotransplant. org Eurotransplant. org Current Condition Current Condition Eurotransplant Collaborative Framework Eurotransplant. org Organ balance necessary condition for cooperation - ensuring that the exchange of organs between countries remains reasonably in balance and to compensate for the differences in donor ratio and for the effect of different criteria for allowing patients on the waiting list Eurotransplant. org 2
Legal Prerequisites Legal Prerequisites Concepts and Systems of organ donation Concepts and Systems of organ donation Presumed Consent Organ donation is automatically considered in patients diagnosed brain dead, unless they have specifically registered their wish not willing to donate In some countries, doctors will still ask permission from relatives Informed Consent Voluntary system of organ donation, whereby relatives give permission at the time of death, usually in the knowledge that the potential donor had expressed a wish to become a donor Informed Consent Voluntary system of organ donation, whereby relatives give permission at the time of death, usually in the knowledge that the potential donor had expressed a wish to become a donor Donor Card Legal Prerequisites Current Condition Legal constitution differs within the countries of Eurotransplant region Country Austria Belgium Croatia Germany Hungary Luxemburg The Netherlands Slovenia Donor's legal situation Informed consent Informed consent German Organ Transplantation Foundation (DSO) is an incorporated foundation according to civil law in Germany after the German Transplant Law was passed in 1997, the DSO was officially assigned the role of organ procurement agency by a contract which outlined its responsibilities in coordinating the organ donation procedure promote and support for organ donation and transplantation Eurotransplant. org www.dso.de 3
Outline 1. Current condition of organ allocation and transplantation 2. Organ donation decrease 3. Organ donation campaigns Series of Organ Transplantation Scandals July 2012: media report on manipulation of listing status of patients for liver tx, two physicians under investigation at the university clinics Goettingen August 2012: one of the two physicians under investigation in Goettingen may have performed manipulation to fast-track patients for liver tx at university hospital in Regensburg January 2013: media report on manipulation of listing status of patients for tx, university hospital Munich (TUM), Leipzig August 2014: report to the authorities of false manipulations related to transplant wait list procedures at the heart center in Berlin dpa Federal Responses to Organ Transplantation Scandals Public Responses to Organ Transplantation Scandals July 2012: Physicians under investigation are suspended June 2013: Federal Parliament changes transplantation act in order to allow sanctioning of manipulations and fraud related to transplant wait list procedures August 2013: start of lawsuit against head physician from university clinic Goettingen August 2013 - onwards: audits of independent experts of archived patient documentations in all transplant centers 37% decrease of deceased organ donors dpa dso.de 4
Consequences of Organ Transplantation Scandals Consequences of Organ Transplantation Scandals - Published statistics available provide limited information to compare pre- versus post-scandal conditions - More than 10,000 pts on the waitlist (Eurotransplant, 09.2016) - Current donor shortage of donor organs results in the death of 1,000 pts on the waitlist every year (Kaiser et al.,2016) dso.de dso.de Consequences of Organ Transplantation Scandals Consequences of Organ Transplantation Scandals - Drop in donor numbers - 2012-2011: 13% (Stafford, 2013) - Drop in transplantations performed - 2015: overall 3,777 transplants performed - Drop in donor numbers - 2012-2011: 13% (Stafford, 2013) - Drop in transplantations performed - 2015: overall 3,777 transplants performed dso.de dso.de 5
Consequences of Organ Transplantation Scandals huge interest from the media Consequences of Organ Transplantation Scandals huge interest from the media Decrease per region; comparison organ donations 2013 versus mean status 2000-2012 Print media overregional distribution 1.5 Mill exemplars 216 articles within 12mts dso.de; Spiegel-online.de Hoisl, et al., The Anesthesiologist 2015 Outline Consequences of Organ Transplantation Scandals huge interest from the media Content analysis of 216 articles Most categories (63.8%) placed negative evaluative opinion (e.g. loss of confidence, enrichment of persons involved, fraud, misconduct, rejection of brain death and disturbing the peace of the dead) Minority of 36.2% of news articles tried to convey objective information (e.g. problems, and consequences of organ shortage) 1. Current condition of organ allocation and transplantation 2. Organ donation decrease 3. Organ donation campaigns Hoisl, et al., The Anaestesiast 2015 6
- First wave in 2014 Since 2014 a wide range of public education and information activities are underway including National multi-media campaigns Advertising Research activities to better understand specific needs -1 st wave- DSO performed an analysis of 1,284 donation requests, including the outcome 38% of donations based on expected will 23% consent from relatives 12% carried a donor card DSO.de -1st wave- -1 st wave- Campaign between June- December 2014 I decide Advertisements in newspapers and magazines 10,000 Large-scale poster walls, and 13,000 city light posters with a reach of 44.18 Mill. people, and 7.78 Mill. young adults DSO.de DSO.de 7
-2 nd wave- In 2016, second wave of public education and information activities including National multi-media campaigns Advertising Research activities -2nd wave- June 1, 2016 Press release Preliminary findings from a second nation-wide representative survey on beliefs, knowledge, and behavior with respect to organ- and tissue donation in German citizens in 2016 with 4,003 participants in the age range 14-75 years DSO.de Pressestelle BMG Bund, 2016-2nd wave- -2 nd wave- June 1, 2016 Press release 54% feel well informed (2013: 44%) 81% report on having a positive attitude on tissue- and organ donation (2010: 79%) 32% carry a donor card (2010: 25%) Brochure Uses known faces like actors, Comedians, moderators, sports men Organ donation?! I have made my decision Pressestelle BMG Bund, 2016 DSO.de 8
-2 nd wave- -2 nd wave- Internet campaign Advertisements Video clip Organ donation stories Online organ donation magazine Interviews Day of Organ Transplantation Advertisements Video clip Organ donation stories Online organ donation magazine Interviews -2 nd wave- -Research Activities- Organ Godparent Award Faces Organ donation stories Interviews Survey on organ donation attitudes among 5,291 participants Majority of 65.2% was willing to organ donation postmortem 40.1% held a donor card Uhlig et al., 2015 9
-Research Activities- -Research Activities- Uhlig et al., 2015 Uhlig et al., 2015 -Research Activities- Multiple answer categories possible Uhlig et al., 2015 Summary Transplant scandals decreased organ donation and transplantation rates in Germany Media have an important influence on the decision-making process of the public Multi-media campaigns and adjusted regulations led to higher public awareness more positive attitudes higher rates of donor card holders Small increases in transplant rates 10
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