Deceased organ donation and health literacy

Abstract

Background: Organ shortage remains the biggest challenge in transplantation worldwide. Principles of health literacy (HL) are used to aid individuals make informed decisions about their health. Methods: An observational, cross-cultural comparative, mixed-methods study design was employed involving three European countries (N=1111); The Netherlands (n=503), United Kingdom (n=312), Spain (n=296) consisting of patients, administrative staff and medical students. Empirical review of HL principles and each country’s national transplant organisation website were used to construct a DOD-HL questionnaire (DHQ). The DHQ was used to measure and rank each parameter of HL with respect to supporter-registrant profiling using descriptive and predictive regression analyses. Qualitative data from focus group interviews (N=9) added context to the DHQ results. Results: Support for DOD surpassed registration rates, in all three countries (p < 0.001***). Communication about DOD attitudes and wishes were generally positive and bidirectional. Willingness to grant consent was greater for close, compared to distant family members. Knowledge scores for DOD topics were negative in all three countries (p < 0.001). Participants were most knowledgeable on waiting lists and least knowledgeable on technical aspects and in-hospital protocols. Non-discussion behaviours, poor knowledge about common health related topics, older age and lower educational background were observed among non-supporters and non-registrants. Predictive modelling showed that the arrangement of top-ranking variables was different for ‘support’ and ‘registration’. Focus group discussions revealed utilitarian values and social responsibility as primary motivational drivers. Conclusion: The study validated that support for DOD does not directly translate into registration. Mapping individuals’ values, background, communication patterns and knowledgeability provides a greater understanding of the interplay between these variables. Health campaigns should focus on extending the use of HL principles beyond the healthcare setting to create a better culture of social awareness on DOD through targeted informativity and guided interactivity and translate inaction into action.