A Program of Research to Evaluate the Impact of Deceased Organ Donation Legislative Reform in Nova Scotia: The LEADDR Program.
Ontology highlight
ABSTRACT: Background
This is the first time deemed consent, where the entire population of a jurisdiction is considered to have consented for donation unless they have registered otherwise, will be implemented in North America. While relatively common in other regions of the world-notably Western Europe-it is uncertain how this practice will influence deceased donation practices and attitudes in Canada.Methods
We describe a Health Canada funded program of research that will evaluate the implementation process and full impact of the deceased organ donation legislation and the health system transformation in Nova Scotia that includes opt-out consent.Results
There is a need to evaluate the impact of these changes to inform not only Nova Scotia and Atlantic Canada, but also other provincial, national, and international stakeholders.Conclusions
We establish a rigorous academic framework that we will use to evaluate this significant health system transformation.
SUBMITTER: Weiss MJ
PROVIDER: S-EPMC7738157 | biostudies-literature | 2021 Jan
REPOSITORIES: biostudies-literature
Publications
A Program of Research to Evaluate the Impact of Deceased Organ Donation Legislative Reform in Nova Scotia: The LEADDR Program.
Weiss Matthew J MJ Krmpotic Kristina K Cyr Tim T Dhanani Sonny S Dieudé Mélanie M Dirk Jade S JS Hartell David D Isenor Cynthia C James Lee L Lucas Amanda A Patriquin Chelsea C Simpson Christy C Sullivan Victoria L VL Tennankore Karthik K KK Thurlow Jennifer J Urquhart Robin R Vorster Hans H Beed Stephen D SD
Transplantation direct 20201215 1
<h4>Background</h4>This is the first time deemed consent, where the entire population of a jurisdiction is considered to have consented for donation unless they have registered otherwise, will be implemented in North America. While relatively common in other regions of the world-notably Western Europe-it is uncertain how this practice will influence deceased donation practices and attitudes in Canada.<h4>Methods</h4>We describe a Health Canada funded program of research that will evaluate the im ...[more]
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Project description:BACKGROUND:Since 2010 the People's Republic of China has been engaged in an effort to reform its system of organ transplantation by developing a voluntary organ donation and allocation infrastructure. This has required a shift in the procurement of organs sourced from China's prison and security apparatus to hospital-based voluntary donors declared dead by neurological and/or circulatory criteria. Chinese officials announced that from January 1, 2015, hospital-based donors would be the sole source of organs. This paper examines the availability, transparency, integrity, and consistency of China's official transplant data. METHODS:Forensic statistical methods were used to examine key deceased organ donation datasets from 2010 to 2018. Two central-level datasets - published by the China Organ Transplant Response System (COTRS) and the Red Cross Society of China - are tested for evidence of manipulation, including conformance to simple mathematical formulae, arbitrary internal ratios, the presence of anomalous data artefacts, and cross-consistency. Provincial-level data in five regions are tested for coherence, consistency, and plausibility, and individual hospital data in those provinces are examined for consistency with provincial-level data. RESULTS:COTRS data conforms almost precisely to a mathematical formula (which first appeared to be a general quadratic, but with further confirmatory data was discovered to be a simpler one-parameter quadratic) while Central Red Cross data mirrors it, albeit imperfectly. The analysis of both datasets suggests human-directed data manufacture and manipulation. Contradictory, implausible, or anomalous data artefacts were found in five provincial datasets, suggesting that these data may have been manipulated to enforce conformity with central quotas. A number of the distinctive features of China's current organ procurement and allocation system are discussed, including apparent misclassification of nonvoluntary donors as voluntary. CONCLUSION:A variety of evidence points to what the authors believe can only be plausibly explained by systematic falsification and manipulation of official organ transplant datasets in China. Some apparently nonvoluntary donors also appear to be misclassified as voluntary. This takes place alongside genuine voluntary organ transplant activity, which is often incentivized by large cash payments. These findings are relevant for international interactions with China's organ transplantation system.
| S-EPMC6854896 | biostudies-literature
Project description:BackgroundThe Canadian province of Nova Scotia recently became the first jurisdiction in North America to pass deemed consent organ donation legislation. The announcement of this legislation generated substantial online discussion, which we analyzed to provide insights on public perception.MethodsWe performed directed content analysis on 2663 user-generated comments appearing on two widely-shared Canadian Broadcasting Company (CBC) articles published online in April 2019. We determined levels of support and opposition in comments and described the specific rhetoric used for doing so. We also performed one-way ANOVA and Pearson chi-square tests to determine how the comments were being received and engaged by other users.ResultsA range of commentary was present in both support and opposition to the changes in legislation. There were more negative than positive comments, and negative commentary generated more replies. Positive comments were received more positively by other users while negative comments were received more negatively. The total sum of negative comments was greatly influenced by a small number of very active participants. Negative commentary focused more on broad concepts and principles related to government, power, and individual rights rather than specific issues in the Nova Scotian context. Substantial issues of trust in the government and healthcare system were evident.ConclusionsThere were strong positive and negative sentiments expressed in the comments, but the total sum of negativity in the comments was significantly influenced by a small number of commentators. Analysis on the presumed consent concerns can be helpful to inform public outreach efforts.
| S-EPMC9754165 | biostudies-literature
Project description:The variability in deceased organ donation registries worldwide has received little attention. We considered all operating registries, where individual wishes about organ donation were recorded in a computerized database. We included registries which recorded an individual's decision to be a donor (donor registry), and registries which only recorded an individual's objection (non-donor registry). We collected information on 15 characteristics including history, design, use and number of registrants for 27 registries (68%). Most registries are nationally operated and government-owned. Registrations in five nations expire and require renewal. Some registries provide the option to make specific organ selections in the donation decision. Just over half of donor registries provide legally binding authorization to donation. In all national donor registries, except one, the proportion of adults (15+) registered is modest (<40%). These proportions can be even lower when only affirmative decisions are considered. One nation provides priority status on the transplant waiting list as an incentive to affirmative registration, while another nation makes registering a donation decision mandatory to obtain a driver's license. Registered objections in non-donor registries are rare (<0.5%). The variation in organ donor registries worldwide necessitates public discourse and quality improvement initiatives, to identify and support leading practices in registry use.
| S-EPMC3440579 | biostudies-literature
Project description:Background: An emerging strategy to increase deceased organ donation is to use dedicated donation physicians to champion organ donation. We sought to conduct a systematic review of the effectiveness of donation physicians in improving organ donation outcomes. Objective: A systematic review was conducted following Cochrane principles. MEDLINE, Embase, and CINHAL databases were searched from inception to March 26, 2020. Methods: Quantitative studies examining the effects of donation physicians on all deceased organ donation outcomes were considered for inclusion. Review articles, editorials and opinion articles, and case studies were excluded. Study selection was completed independently by 2 team members; all discrepancies were resolved by consensus. Two team members independently extracted data from studies. Results: A total of 1017 studies were screened, and 12 met inclusion criteria. Included studies were published between 1994 and 2019. Half used an interrupted time series design (n = 6; 50%), 3 (25%) were cohort studies, and 3 (25%) used a before-and-after study design. Outcomes (reported in greater than 50% of included articles) included consent/refusal rate (n = 8; 67%), number of potential donors (n = 7; 58%), and number of actual donors (n = 7; 58%). Across studies and design types, there was an increase in potential organ donors ranging from 8% to 143% (Mdn = 33%), an increase in actual organ donors from 15% to 113% (Mdn = 27%), an increase in donor consent rate from −3% to 258% (Mdn = 12%), and an increase in deceased donor transplants from 13% to 24% (Mdn = 19%) following the introduction of donation physicians. Conclusions: Donation physicians have the potential to significantly improve deceased organ donation. Further implementation and evaluation of donation physician programs is warranted. However, implementation should be undertaken with a clear plan for a methodologically rigorous evaluation of outcomes.
| S-EPMC9218440 | biostudies-literature
Project description:BackgroundAs the imbalance in organ demand and supply is getting worse, <1000 patients waiting for organ transplants die each year in South Korea. To enhance positive attitudes to deceased organ-tissue donation through systematic education, we developed an educational program with delivery pathways for premedical and medical students.MethodsOnline and offline self-learning educational materials on deceased organ-tissue donation were generated and posted on the Vitallink Academy YouTube site. Thirty-two pre- and 15 posteducation questionnaires were developed using a web-based survey platform, and conducted before and immediately after the education process. The education proceeded in 3 steps: (1) group study sessions on selected topics, (2) poster submissions by each group and the selection of excellent poster by the organizing committee, and (3) excellent poster presentation and questions and answers.ResultsA total of 141 students in the first year of premedical classes at the Seoul National University College of Medicine participated in this program. Only 24.2% of responders agreed that anyone who was diagnosed with brain death should donate. The proportion of students with positive attitudes toward organ-tissue donation increased from 74.7% to 97.7% (P < 0.001) with our education. Likewise, interest in deceased organ-tissue donation-related issues increased from 33.3% to 84.9% (P < 0.001). The expressed willingness for organ-tissue donation also increased from 76.8% to 96.5% (P < 0.001). The proportion of accepting brain death as the determination of death increased from 61.6% to 89.5% (P < 0.001). Moreover, 81.4% changed their approach and planned to register with an organ donor card.ConclusionsIn this study, significant improvements were observed in knowledge, awareness, and attitude toward organ-tissue donation with our newly developed co-participatory education program for premedical students. Hence, target-specific education can be regarded as a valuable approach to enhancing public awareness of deceased organ-tissue donation.
| S-EPMC10803035 | biostudies-literature
Project description: Not available
| S-EPMC8283419 | biostudies-literature
Project description:Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.
| S-EPMC6980458 | biostudies-literature
Project description:BackgroundThe organ donation in China has developed rapidly since fully launched donations after citizens death in 2015. This study was conducted to evaluate how the Chinese general public views changed on deceased organ donation, and to improve the donation process.MethodsA total of 110 eligible studies, including 103, 410 individuals, were selected to analyze through searching PubMed, CBMdisc, CQVIP, CNKI, and Wanfang Data from Jan 1, 1990 to May 31, 2019. The pooled proportions (and 95% CIs) of cognition, attitudes and willingness related to organ donation were calculated using the Freeman-Tukey double arcsine transformation.ResultsThe pooled proportions of knowing about organ donation and willing to donate increased from 84.6% (73.0-93.4) and 32.4% (23.9-41.6) before 2015, to 86.4% (74.5-95.1) and 39.9% (32.8-47.2) after 2015, respectively. The willingness to posthumous organ donation for cornea, heart, kidney, and liver had a significant improvement. Especially, the proportion of willingness to donate cornea increased to 56.0% (43.3-68.3) after 2015, from 39.2% (31.2-47.4) before 2015. However, although 69.7% (62.7-76.4) of participants approved the deceased organ donation, only 35.6% (29.7-41.8) and 43.9% (37.2-50.8) were willing to donate their own and relatives organs postmortem, respectively. The leading reasons for refraining from donating organs postmortem were distrusting the medical professionals (49.8%, 35.2-64.4) and traditional Chinese values (40.6%, 32.4-49.0). Popularizing knowledge about organ donation (61.5%, 45.7-76.1), humanitarian aid (57.1%, 48.8-65.3), and priority of using donated organs for relatives (53.1%, 30.8-74.7) were the applauded strategies to improve the willingness to posthumous organ donation.ConclusionsThe willingness toward posthumous organ donation has a significant improvement among Chinese general public since 2015, however, several important measures still need to be taken to promote the favorable attitudes and willingness toward organ donation.
| S-EPMC7738062 | biostudies-literature
Project description:BackgroundThis study aimed to investigate differences in knowledge, and attitudes toward deceased organ and tissue donation of emergency physicians. Additionally, we analyzed factors affecting the attitudes toward deceased organ and tissue donation.MethodsWe conducted a survey of specialists and residents registered with the Korean Society of Emergency Medicine in December 2020. The respondents' sex, age, position, personal registration for organ donation, experience of soliciting organ donation, participation in related education, knowledge, and attitude about brain death organ donation, and attitude toward stopping life-sustaining treatments were investigated. According to the characteristics of the respondents (specialists or residents, experience and education on organ and tissue donation), their knowledge and attitude toward deceased organ donation were compared. Stepwise hierarchical multiple regression analysis was used to investigate the factors affecting the attitudes toward deceased organ and tissue donation.ResultsOf the total 428 respondents, there were 292 emergency medicine specialists and 136 medical residents. Specialists and those who registered or wished to donate organs had higher knowledge and attitude scores regarding deceased organ and tissue donation. Those who had experience recommending organ and tissue donation more than 6 times had higher knowledge scores on deceased organ and tissue donation and higher overall scores in attitude. Those who received education from the Korean Organ Donation Agency had higher knowledge scores. Specialists, and those who wished to donate or had registered as organ donors and had a higher life-sustaining treatment attitude score and knowledge about deceased organ and tissue donation, had more positive attitudes toward deceased organ and tissue donation.ConclusionFor more potential deceased organ and tissue donors to be referred for donation, there should be continuous education for emergency physicians on brain-dead organ and tissue donation-related knowledge and procedures. In addition, institutional or systematic improvements that can lead to organ donation when deciding on the withdrawal of life-sustaining treatment should be considered.
| S-EPMC8688344 | biostudies-literature
Project description:In many countries, such as the US, Germany, France, and the Netherlands, governments are dealing with a great shortage of organ donors. Even though people generally show positive attitudes towards organ donation, they often do not actually register as organ donors themselves. This study's objective was to explore prevailing viewpoints among the Dutch population on deceased organ donation and the relation between aspects of the viewpoints potentially influencing the decision to register as an organ donor. Although substantive research about attitudes on organ donation has been conducted, this is the first study investigating people's viewpoints focusing on the relation between beliefs, tastes, preferences, motives, goals and other constituents underlying people's viewpoints on organ donation, such as the role of the media and public policies. This Q-methodology study revealed four viewpoints: "not donating your organs is a waste", "it does not go with my religion", "my family should decide"; and "it's a good deed, but I'm doubtful". These viewpoints convey information on potential reasons for the gap between people's favourable attitudes towards organ donation and the low number of actual registrations, and opportunities for policy makers to address certain target groups more adequately.
| S-EPMC6534345 | biostudies-literature