Systematic review and focus group discussions of public preferences for the allocation of deceased donor organs as preliminary works: Building a discrete choice experiment evaluating principles of distributive justice
Carina Oedingen1,2, Tim Bartling1,2, Marie-Luise Dierks1, Axel C. Mühlbacher3,4, Harald Schrem5,6, Christian Krauth1,2.
1Institute for Epidemiology, Social Medicine and Health Systems Research, Hannover Medical School, Hannover, Germany; 2Center for Health Economics Research Hannover (CHERH), Hannover, Germany; 3Institute of Health Economics and Health Care Management, Hochschule Neubrandenburg, Neubrandeburg, Germany; 4Duke Department of Population Health Sciences and Duke Global Health Institute, Duke University, Durham, NC, United States; 5Department of General, Visceral and Transplant Surgery, Medical University Graz, Graz, Austria; 6Transplant Center Graz, Medical University Graz, Graz, Austria
Introduction: Transplantation is the treatment of choice for organ failure, but deceased donor organs are a scarce resource because of a large supply and demand-mismatch. This scarcity leads to an ethical dilemma, forcing priority setting in organ allocation to wait-listed patients. To date, little is known about public preferences regarding priority setting in organ allocation. We explore public preferences for the allocation of donor organs in Germany. The aims are to determine criteria and preferences for the allocation and to elucidate the relative importance of different criteria. A systematic review and focus group discussions were conducted as preliminary works in regard to ethical aspects of distributive justice.
Materials and Methods: To investigate the preferences we use a discrete choice experiment (DCE). According to the ISPOR guidelines we use both an overview of the existing evidence and qualitative methods to design the upcoming DCE. The systematic review contained literature from the databases PubMed, Web of Science, EBSCO and PsycINFO between January 2000 and December 2018. Only original studies were selected. The criteria were identified, extracted and grouped into a self-developed matrix according to the principles of distributive justice to ascertain public preferences. The focus groups were facilitated between November and December 2018 at Hannover Medical School. Participants were recruited locally. Transcripts were assessed with content analysis using the deductive framework method. Reporting followed the COREQ statement.
Results and Discussion: Overall, 9,645 references were identified, and 15 studies were included in the review. In total, 27 criteria clustered in seven theory-guided groups could be identified: “equality”, “effectiveness/benefit”, “medical urgency”, “own fault”, “value for society”, “medical background” and “sociodemographic status”. It was shown that not only a single principle but rather a combination of principles are relevant for the allocation. Therefore, a public propensity towards a rational utilitarian ethical model of allocation could be recognized.
Six focus groups with 31 participants were conducted. Overall, no group made a final decision of how to allocate donor organs. The public wants to allocate organs to save as many lives as possible by both maximizing the success and also giving priority to urgent patients considering the best compatibility. Age, waiting time, reciprocity and healthy lifestyles should be used as additional criteria, while sex, financial status and family responsibility should not, based on equality.
Conclusion: The two preliminary works delivered important aspects for the design of the upcoming DCE. Public preferences for organ allocation are complex and data regarding clear trade-offs are still lacking. We expect that the results of the DCE allow a better understanding of public preferences and contribute to influence the organ allocation policy.
This study was funded by the German Federal Ministry of Education and Research (Grant no.: 01EH1603B). The funding source had no role in the study and no influence on the data collection and analyses, interpretation of the results or writing of the publication..
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