Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study

Jane Noyes; Leah McLaughlin; Karen Morgan; Philip Walton; Rebecca Curtis; Susanna Madden; Abigail Roberts; Michael Stephens

doi:10.1136/bmjopen-2018-025159

Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study

Jane Noyes, Leah McLaughlin, Karen Morgan, Philip Walton, Rebecca Curtis, Susanna Madden, Abigail Roberts, Michael Stephens

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Abstract

OBJECTIVES: To determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.

DESIGN: Before and after observational study using bespoke routinely collected data.

SETTING: National Health Service Blood and Transplant.

PARTICIPANTS: 205 potential organ donor cases in Wales.

INTERVENTIONS: The Act and implementation strategy.

PRIMARY AND SECONDARY OUTCOMES: Consent 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.

RESULTS: The 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.

CONCLUSION: This 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.

Original language	English
Pages (from-to)	e025159
Journal	BMJ Open
Volume	9
Issue number	4
DOIs	https://doi.org/10.1136/bmjopen-2018-025159
Publication status	Published - 3 Apr 2019

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@article{566fca103edf4a4a9f33a47baf224437,

title = "Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study",

abstract = "OBJECTIVES: To determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DESIGN: Before and after observational study using bespoke routinely collected data.SETTING: National Health Service Blood and Transplant.PARTICIPANTS: 205 potential organ donor cases in Wales.INTERVENTIONS: The Act and implementation strategy.PRIMARY AND SECONDARY OUTCOMES: Consent 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.RESULTS: The 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.CONCLUSION: This 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.",

author = "Jane Noyes and Leah McLaughlin and Karen Morgan and Philip Walton and Rebecca Curtis and Susanna Madden and Abigail Roberts and Michael Stephens",

note = "{\textcopyright} 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.",

year = "2019",

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doi = "10.1136/bmjopen-2018-025159",

language = "English",

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T1 - Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study

AU - Noyes, Jane

AU - McLaughlin, Leah

AU - Morgan, Karen

AU - Walton, Philip

AU - Curtis, Rebecca

AU - Madden, Susanna

AU - Roberts, Abigail

AU - Stephens, Michael

PY - 2019/4/3

Y1 - 2019/4/3

N2 - OBJECTIVES: To determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DESIGN: Before and after observational study using bespoke routinely collected data.SETTING: National Health Service Blood and Transplant.PARTICIPANTS: 205 potential organ donor cases in Wales.INTERVENTIONS: The Act and implementation strategy.PRIMARY AND SECONDARY OUTCOMES: Consent 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.RESULTS: The 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.CONCLUSION: This 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.

AB - OBJECTIVES: To determine the short-term impact of a soft opt-out organ donation system on consent rates and donor numbers.DESIGN: Before and after observational study using bespoke routinely collected data.SETTING: National Health Service Blood and Transplant.PARTICIPANTS: 205 potential organ donor cases in Wales.INTERVENTIONS: The Act and implementation strategy.PRIMARY AND SECONDARY OUTCOMES: Consent 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.RESULTS: The 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.CONCLUSION: This 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.

U2 - 10.1136/bmjopen-2018-025159

DO - 10.1136/bmjopen-2018-025159

M3 - Article

C2 - 30948578

SN - 2044-6055

VL - 9

SP - e025159

JO - BMJ Open

JF - BMJ Open

IS - 4

ER -

Short-term impact of introducing a soft opt-out organ donation system in Wales: before and after study

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