Factors affecting organ donation status of University students: a cross-sectional study of a large University in the UK
Alderman JE1,2,3, Owen A1,3.
Over 400 people die annually awaiting donor organs in the UK, with the waiting list currently 6400 people. (1) Though donation rates are increasing – almost doubling over the last decade – a gap remains between organ availability and requirement. The donor organ shortage disproportionately affects black, asian and minority ethnic (BAME) people - who represent 11% of the UK population, but accounted for just 5.8% of kidney transplants in 2015-16 (3). BAME people face 20% longer waiting times for donor kidneys, highlighting the real-world effect of this discrepancy. (3)
Organ donation policy is a devolved matter, with different approaches across the UK. Wales transitioned to a ‘deemed consent’ (otherwise known as ‘opt-out’) system in 2015, and the Scottish Government recently voted to adopt a similar policy. (4) In England and Northern Ireland, potential donors can indicate prospective consent, or their surviving family may consent on their behalf – an ‘opt-in’ model. (5,6) Family members lack legal power to overrule a patient’s recorded wishes regarding donation, but in practice donation does not proceed without assent from surviving family members. Refusal by family members prevented 1234 donations in 2015/16, of which 120 overruled the prior recorded wish of the deceased to donate their organs. (7)
This work details a survey of University students conducted between February and April 2012 to elucidate factors affecting organ donor status, and their views regarding a transition to an ‘opt-out’ system of presumed consent for donation, where absence of recorded refusal to donate will be deemed a surrogate for consent.
Students at the University of Birmingham were invited to complete an electronic questionnaire. Email invitations were disseminated via group mailing lists to every student registered at the University, electronic links were appended to campus-wide online noticeboards, and campus based social media groups were used to distribute information about the project to as many students as possible. Only University of Birmingham students were eligible to take part; there were no exclusion criteria.
An initial pilot phase involved focus group sessions to elicit themes for the eventual questionnaire, and from these qualitative data a survey was compiled for general distribution. The first draft of the survey was disseminated to 10 students who were asked to comment on clarity, logic flow, and ease of completion. Feedback was collated and used to improve quality and reliability of the final survey.
Participants were asked about whether they were registered as organ donors, reasons for their decision, attitudes and beliefs surrounding donation more broadly, whether they would agree with the UK transitioning to an ‘opt-out’ system of presumed consent, and for biographical information, including the postcode where they grew up (the latter was voluntary). Five-point Likert scales were used to assess degree of agreement or disagreement with various statements collated from focus group and pilot data.
Data were analysed using Microsoft Excel for Mac (v15.34) and SPSS Statistics for Mac (v24). Likert data were mapped to numerical values, and are presented as horizontal bar charts coloured and horizontally shifted to demonstrate degree of agreement or disagreement. Categorical data were analysed in contingency tables using the Chi square test. Postcode data were mapped to indices of deprivation, and correlation was assessed against organ donor status and acceptance of ‘opt-out’ using Pearson’s Rank.
Overall 749 respondents took part – 498 (66%) female, and 477 (63.7%) registered as organ donors – double the national UK average. (8) Respondents who were registered organ donors were significantly more favourable towards a change to an ‘opt-out’ system than those not registered as donors (see Figure 1). Participants who were not donors, but who had no objection to becoming donors, commonly cited lack of opportunity to register, or lack of knowledge of donation, as their reasons for not having registered (data not shown).
Subset analysis by religious affiliation highlighted differences in donor registration rates amongst students who were religious vs those who weren’t, displayed by religion in Figure 2. Students who were not donors were asked for their reasons for their current status, again highlighting differences between students affiliated with different religions or none (see Figure 3). Taken together, these figures suggest that religious affiliation may be a factor when people consider whether to register as an organ donor.
Though not compulsory, 481 respondents provided the postcode of their childhood home when completing the questionnaire. These were mapped to indices of deprivation obtained from UK Government data available online. Overall there was a trend such that students growing up in more deprived areas were less likely to be registered organ donors (R2 = 0.251), and less agreeable with transition to an ‘opt-out’ system (R2 = 0.341), though due to limited numbers both of these findings lacked significance (p=0.104 and 0.07 respectively).
Though the UK has made significant progress towards reducing excess mortality and morbidity whilst waiting for donor organs, there remains a substantial risk of death prior to an organ being made available. Improvements in general medical care, and public health measures to prevent the need for donation notwithstanding, increasing availability of donor organs is critical to improving health for those with end stage organ dysfunction.
Changing from the UK’s current ‘opt-in’ to an ‘opt-out’ system, where consent for organ retrieval and donation is presumed, has been offered as a means to boost organ availability. Internationally some countries have enjoyed increased organ donation rates following introduction of such policies. Spain adopted ‘opt-out’ in 1979, and is the world leader in organ donation, with over double the UK’s per capita transplant rate. (19) Interestingly, the USA rivals Spain’s transplantation rates, yet retains an ‘opt-in’ system for donation. Moreover, several other nations who have transitioned to ‘opt-out’ systems have not experienced the success observed in Spain.
It is likely that Spain’s high transplantation rate is a product of multiple factors, including ready availability of critical care beds to enable heart-beating organ donation following brainstem death, proactive and prospective donor identification, and a prolonged period of public education about donation, encouraging discussion about this historically taboo topic at the end of life.
The data we present herein is limited in its scope, due to small subset size. However, we demonstrate that in our sample of educated University students, there is a subgroup who are reluctant to registering as organ donors, and who would be resistant to the idea of an ‘opt-out’ system. Legislating for a change to ‘opt-out’ without attempting to persuade this group risks their alienation, which could lead to them registering their refusal to donate.
Additionally, our data demonstrate that religious affiliation and deprivation index could be factors to consider when planning population-level interventions to boost engagement with organ donation. Our survey was not designed to interrogate these subgroups specifically, and numbers are small, so our data must be taken with caution. These issues notwithstanding, we argue that the trend shown justifies further research to interrogate how religious or cultural objection might impact on planned measures to boost donation rates. We recommend that the upcoming UK Government consultation on organ donation be structured to encourage BAME communities, and people in relatively deprived areas to offer their thoughts and views.
UK transplantation rate, though improving, remains low compared to similarly developed countries. BAME people are disproportionately affected by donor organ shortage. ‘Opt-out’ has been suggested as a measure to boost organ donation and transplantation.
Our data suggest that amongst young people, those who are religious, and those living in relatively deprived areas, are less likely to be organ donors. Furthermore, those not registered as donors are less likely to be agreeable towards a change to an ‘opt-out’ system.
Improving mortality and morbidity from end-stage organ dysfunction requires increased donor organ supply. The upcoming UK Government consultation on organ donation should attempt to clarify the effect of religion, culture and deprivation on donor status and attitudes, and plan measures to improve engagement amongst particularly BAME people.