Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study
ObjectivesTo determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DesignBefore and after observational study using bespoke routinely collected data.SettingNational Health Service Blood and Transplant.Participants205 potential organ donor cases in...
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description | ObjectivesTo determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DesignBefore and after observational study using bespoke routinely collected data.SettingNational Health Service Blood and Transplant.Participants205 potential organ donor cases in Wales.InterventionsThe Act and implementation strategy.Primary and secondary outcomesConsent rates at 18 months post implementation compared with 3 previous years, and organ donor numbers 21 months before and after implementation. Changes in organ donor register activity post implementation for 18 months.ResultsThe consent rate for all modes of consent was 61.0% (125/205), showing a recovery from the dip to 45.8% in 2014/2015. 22.4% (46/205) were deemed consented donors: consent rate 60.8% (28/46). Compared with the 3 years before the switch there was a significant difference in Welsh consent rates (χ2 p value=0.009). Over the same time period, rest of the UK consent rates also significantly increased from 58.6% (5256/8969) to 63.1% (2913/4614) (χ2 p value |
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Changes in organ donor register activity post implementation for 18 months.ResultsThe consent rate for all modes of consent was 61.0% (125/205), showing a recovery from the dip to 45.8% in 2014/2015. 22.4% (46/205) were deemed consented donors: consent rate 60.8% (28/46). Compared with the 3 years before the switch there was a significant difference in Welsh consent rates (χ2 p value=0.009). Over the same time period, rest of the UK consent rates also significantly increased from 58.6% (5256/8969) to 63.1% (2913/4614) (χ2 p value<0.0001), therefore the Wales increase cannot be attributed to the Welsh legislation change. Deceased donors did not increase: 101 compared with 104. Organ donation registration increased from 34% to 38% with 6% registering to opt-out.ConclusionThis is the first rigorous initial evaluation with bespoke data collected on all cases. The longer-term impact on consent rates and donor numbers is unclear. Concerns about a potential backlash and mass opting out were not realised. The move to a soft opt-out system has not resulted in a step change in organ donation behaviour, but can be seen as the first step of a longer journey. Policymakers should not assume that soft opt-out systems by themselves simply need more time to have a meaningful effect. Ongoing interventions to further enhance implementation and the public’s understanding of organ donation are needed to reach the 2020 target of 80% consent rates. Further longitudinal monitoring is required.</description><identifier>ISSN: 2044-6055</identifier><identifier>EISSN: 2044-6055</identifier><identifier>DOI: 10.1136/bmjopen-2018-025159</identifier><identifier>PMID: 30948578</identifier><language>eng</language><publisher>England: BMJ Publishing Group LTD</publisher><subject><![CDATA[Blood & organ donations ; Consent Forms ; Decision Making ; Health Knowledge, Attitudes, Practice ; Health Services Research ; Humans ; Informed Consent - legislation & jurisprudence ; Informed Consent - psychology ; Legislation ; Longitudinal Studies ; Medical ethics ; Personal Autonomy ; R&D ; Research & development ; Tissue and Organ Procurement - ethics ; Tissue and Organ Procurement - legislation & jurisprudence ; Tissue Donors - ethics ; Tissue Donors - legislation & jurisprudence ; Transplants & implants ; Wales]]></subject><ispartof>BMJ open, 2019-04, Vol.9 (4), p.e025159-e025159</ispartof><rights>Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.</rights><rights>2019 Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2019</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b472t-ce5dd4cd2f8f6afa357f54ab30331a50c6b6e53e88a15a8c0409c065d56ba8223</citedby><cites>FETCH-LOGICAL-b472t-ce5dd4cd2f8f6afa357f54ab30331a50c6b6e53e88a15a8c0409c065d56ba8223</cites><orcidid>0000-0003-4238-5984</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://bmjopen.bmj.com/content/9/4/e025159.full.pdf$$EPDF$$P50$$Gbmj$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://bmjopen.bmj.com/content/9/4/e025159.full$$EHTML$$P50$$Gbmj$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,27526,27527,27901,27902,53766,53768,77344,77375</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/30948578$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Noyes, Jane</creatorcontrib><creatorcontrib>McLaughlin, Leah</creatorcontrib><creatorcontrib>Morgan, Karen</creatorcontrib><creatorcontrib>Walton, Philip</creatorcontrib><creatorcontrib>Curtis, Rebecca</creatorcontrib><creatorcontrib>Madden, Susanna</creatorcontrib><creatorcontrib>Roberts, Abigail</creatorcontrib><creatorcontrib>Stephens, Michael</creatorcontrib><title>Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study</title><title>BMJ open</title><addtitle>BMJ Open</addtitle><description>ObjectivesTo determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DesignBefore and after observational study using bespoke routinely collected data.SettingNational Health Service Blood and Transplant.Participants205 potential organ donor cases in Wales.InterventionsThe Act and implementation strategy.Primary and secondary outcomesConsent rates at 18 months post implementation compared with 3 previous years, and organ donor numbers 21 months before and after implementation. Changes in organ donor register activity post implementation for 18 months.ResultsThe consent rate for all modes of consent was 61.0% (125/205), showing a recovery from the dip to 45.8% in 2014/2015. 22.4% (46/205) were deemed consented donors: consent rate 60.8% (28/46). Compared with the 3 years before the switch there was a significant difference in Welsh consent rates (χ2 p value=0.009). Over the same time period, rest of the UK consent rates also significantly increased from 58.6% (5256/8969) to 63.1% (2913/4614) (χ2 p value<0.0001), therefore the Wales increase cannot be attributed to the Welsh legislation change. Deceased donors did not increase: 101 compared with 104. Organ donation registration increased from 34% to 38% with 6% registering to opt-out.ConclusionThis is the first rigorous initial evaluation with bespoke data collected on all cases. The longer-term impact on consent rates and donor numbers is unclear. Concerns about a potential backlash and mass opting out were not realised. The move to a soft opt-out system has not resulted in a step change in organ donation behaviour, but can be seen as the first step of a longer journey. Policymakers should not assume that soft opt-out systems by themselves simply need more time to have a meaningful effect. Ongoing interventions to further enhance implementation and the public’s understanding of organ donation are needed to reach the 2020 target of 80% consent rates. Further longitudinal monitoring is required.</description><subject>Blood & organ donations</subject><subject>Consent Forms</subject><subject>Decision Making</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Health Services Research</subject><subject>Humans</subject><subject>Informed Consent - legislation & jurisprudence</subject><subject>Informed Consent - psychology</subject><subject>Legislation</subject><subject>Longitudinal Studies</subject><subject>Medical ethics</subject><subject>Personal Autonomy</subject><subject>R&D</subject><subject>Research & development</subject><subject>Tissue and Organ Procurement - ethics</subject><subject>Tissue and Organ Procurement - legislation & jurisprudence</subject><subject>Tissue Donors - ethics</subject><subject>Tissue Donors - legislation & jurisprudence</subject><subject>Transplants & implants</subject><subject>Wales</subject><issn>2044-6055</issn><issn>2044-6055</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2019</creationdate><recordtype>article</recordtype><sourceid>9YT</sourceid><sourceid>ACMMV</sourceid><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNqNkUtr3DAUhUVpSUKaXxAIgmy6caKHJdtZFErICwJZtKVLca3HxIMtOZJcmH9fDTMNaVfR5grpO4d770HolJILSrm87Kd1mK2vGKFtRZigovuAjhip60oSIT6-uR-ik5TWpJxadEKwA3TISVe3ommPkPv-HGKuso0THqYZdMbB4cHnGMyiB7_CgFNw5XXOVVhKjSvw2AQPeQgep03Ktkg9_gWjTVe4ty5Ei8EbDK7Y4pQXs_mMPjkYkz3Z12P08_bmx_V99fh093D97bHq64blSlthTK0Nc62T4ICLxokaek44pyCIlr20gtu2BSqg1aQmnSZSGCF7aBnjx-jrznde-skabcsgMKo5DhPEjQowqH9__PCsVuG3koIQzrpi8GVvEMPLYlNW05C0HUfwNixJsbJW2ZX98YKe_4euwxJ9GW9LsYaSrqGF4jtKx5BStO61GUrUNkq1j1Jto1S7KIvq7O0cr5q_wRXgYgcU9bsc_wBZ0qvT</recordid><startdate>20190403</startdate><enddate>20190403</enddate><creator>Noyes, Jane</creator><creator>McLaughlin, Leah</creator><creator>Morgan, Karen</creator><creator>Walton, Philip</creator><creator>Curtis, Rebecca</creator><creator>Madden, Susanna</creator><creator>Roberts, Abigail</creator><creator>Stephens, Michael</creator><general>BMJ Publishing Group LTD</general><general>BMJ Publishing Group</general><scope>9YT</scope><scope>ACMMV</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>BTHHO</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>NAPCQ</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-4238-5984</orcidid></search><sort><creationdate>20190403</creationdate><title>Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study</title><author>Noyes, Jane ; McLaughlin, Leah ; Morgan, Karen ; Walton, Philip ; Curtis, Rebecca ; Madden, Susanna ; Roberts, Abigail ; Stephens, Michael</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b472t-ce5dd4cd2f8f6afa357f54ab30331a50c6b6e53e88a15a8c0409c065d56ba8223</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2019</creationdate><topic>Blood & organ donations</topic><topic>Consent Forms</topic><topic>Decision Making</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Health Services Research</topic><topic>Humans</topic><topic>Informed Consent - legislation & jurisprudence</topic><topic>Informed Consent - psychology</topic><topic>Legislation</topic><topic>Longitudinal Studies</topic><topic>Medical ethics</topic><topic>Personal Autonomy</topic><topic>R&D</topic><topic>Research & development</topic><topic>Tissue and Organ Procurement - ethics</topic><topic>Tissue and Organ Procurement - legislation & jurisprudence</topic><topic>Tissue Donors - ethics</topic><topic>Tissue Donors - legislation & jurisprudence</topic><topic>Transplants & implants</topic><topic>Wales</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Noyes, Jane</creatorcontrib><creatorcontrib>McLaughlin, Leah</creatorcontrib><creatorcontrib>Morgan, Karen</creatorcontrib><creatorcontrib>Walton, Philip</creatorcontrib><creatorcontrib>Curtis, Rebecca</creatorcontrib><creatorcontrib>Madden, Susanna</creatorcontrib><creatorcontrib>Roberts, Abigail</creatorcontrib><creatorcontrib>Stephens, Michael</creatorcontrib><collection>BMJ Open Access Journals</collection><collection>BMJ Journals:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>BMJ Journals</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>Consumer Health Database (Alumni Edition)</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Consumer Health Database</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Psychology</collection><collection>Nursing & Allied Health Premium</collection><collection>Publicly Available Content Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>BMJ open</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Noyes, Jane</au><au>McLaughlin, Leah</au><au>Morgan, Karen</au><au>Walton, Philip</au><au>Curtis, Rebecca</au><au>Madden, Susanna</au><au>Roberts, Abigail</au><au>Stephens, Michael</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study</atitle><jtitle>BMJ open</jtitle><addtitle>BMJ Open</addtitle><date>2019-04-03</date><risdate>2019</risdate><volume>9</volume><issue>4</issue><spage>e025159</spage><epage>e025159</epage><pages>e025159-e025159</pages><issn>2044-6055</issn><eissn>2044-6055</eissn><abstract>ObjectivesTo determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DesignBefore and after observational study using bespoke routinely collected data.SettingNational Health Service Blood and Transplant.Participants205 potential organ donor cases in Wales.InterventionsThe Act and implementation strategy.Primary and secondary outcomesConsent rates at 18 months post implementation compared with 3 previous years, and organ donor numbers 21 months before and after implementation. Changes in organ donor register activity post implementation for 18 months.ResultsThe consent rate for all modes of consent was 61.0% (125/205), showing a recovery from the dip to 45.8% in 2014/2015. 22.4% (46/205) were deemed consented donors: consent rate 60.8% (28/46). Compared with the 3 years before the switch there was a significant difference in Welsh consent rates (χ2 p value=0.009). Over the same time period, rest of the UK consent rates also significantly increased from 58.6% (5256/8969) to 63.1% (2913/4614) (χ2 p value<0.0001), therefore the Wales increase cannot be attributed to the Welsh legislation change. Deceased donors did not increase: 101 compared with 104. Organ donation registration increased from 34% to 38% with 6% registering to opt-out.ConclusionThis is the first rigorous initial evaluation with bespoke data collected on all cases. The longer-term impact on consent rates and donor numbers is unclear. Concerns about a potential backlash and mass opting out were not realised. The move to a soft opt-out system has not resulted in a step change in organ donation behaviour, but can be seen as the first step of a longer journey. Policymakers should not assume that soft opt-out systems by themselves simply need more time to have a meaningful effect. Ongoing interventions to further enhance implementation and the public’s understanding of organ donation are needed to reach the 2020 target of 80% consent rates. Further longitudinal monitoring is required.</abstract><cop>England</cop><pub>BMJ Publishing Group LTD</pub><pmid>30948578</pmid><doi>10.1136/bmjopen-2018-025159</doi><orcidid>https://orcid.org/0000-0003-4238-5984</orcidid><oa>free_for_read</oa></addata></record> |
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subjects | Blood & organ donations Consent Forms Decision Making Health Knowledge, Attitudes, Practice Health Services Research Humans Informed Consent - legislation & jurisprudence Informed Consent - psychology Legislation Longitudinal Studies Medical ethics Personal Autonomy R&D Research & development Tissue and Organ Procurement - ethics Tissue and Organ Procurement - legislation & jurisprudence Tissue Donors - ethics Tissue Donors - legislation & jurisprudence Transplants & implants Wales |
title | Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study |
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