Dataset Information

Governance quality indicators for organ procurement policies.

ABSTRACT:

Background

Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries.

Methods

Between 2017-2019, we conducted a convenience sample survey of students (n = 2006) in Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems.

Results

Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support-either informed or uninformed-in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence-either informed or uninformed-among opt-out countries.

Conclusion

Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data.

SUBMITTER: Rodriguez-Arias D

PROVIDER: S-EPMC8177644 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:ImportanceOrgan transplant is a life-saving procedure for patients with end-stage organ failure. In the US, organ procurement organizations (OPOs) are responsible for the evaluation and procurement of organs from donors who have died; however, there is controversy regarding what measures should be used to evaluate their performance.ObjectiveTo evaluate OPO performance metrics using combined mortality and donation data and quantify the associations of population demographics with donation metrics.Design, setting, and participantsThis national cohort study includes data from the US organ transplantation system from January 2008 through December 2017. All individuals who died within the US, as reported by the National Death index, were included.ExposuresDeath, organ donation, and donation eligibility.Main outcomes and measuresEvaluation of the variation in donation metrics and the use of ineligible donors by OPO and demographic subgroup.ResultsThis study included 17 501 742 deaths and 75 769 deceased organ donors (45 040 men [59.4%]; 51 908 White individuals [68.5%]). Of these donors, 15 857 (20.9%) were not eligible, as defined by the OPOs. The median donation metrics by OPO were 0.004 (range, 0.002-0.012) donors per death, 0.89 (range, 0.68-1.30) donors per eligible death, and 0.72 (range, 0.57-0.86) eligible donors per eligible death. The OPOs in the upper quartile of the overall eligible donors per eligible death metric were in the upper quartile of annual rankings on 90 of 140 occasions (64.3%). There was little overlap in top-performing OPOs between metrics; an OPO in the upper quartile for 1 metric was also in the upper quartile for the other metrics on 37 of 570 occasions (6.5% of the time). The median donor eligibility rate, defined as the number of eligible donors per donor, was 0.79 (range, 0.61-0.95) across OPOs. Age (eg, 65 to 84 years, coefficient, -0.55 [SE, 0.03]; P < .001; vs those aged 18 to 34 years), sex (male individuals, -0.09 [SE, 0.02]; P < .001; vs female individuals), race (eg, Black individuals, 0.35 [SE, 0.02]; P < .001; vs White individuals), cause of death (eg, central nervous system tumor, 0.48 [SE, 0.08]; P < .001; vs anoxia), year (eg, 2016-2017: -0.10 [SE, 0.03]; P < .001; vs 2008-2009), and OPO were associated with the use of ineligible donors; OPO was a significant factor associated with performance in all metrics (χ256, 500.5; P < .001; coefficient range across individual OPOs, -0.15 [SE, 0.09] to 0.75 [SE, 0.09]), even after accounting for population differences. Female and non-White individuals were significantly less likely to be used as ineligible donors.Conclusions and relevanceWe demonstrate significant variability in OPO performance rankings, depending on which donation metric is used. There were significant differences in OPO performance, even after accounting for differences in potential donor populations. Our data suggest significant variation in use of ineligible donors among OPOs, a source for increased donors. The performance of OPOs should be evaluated using a range of donation metrics.

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