ISQUA16-2690IMPROVING CARE AND CHOICE AS MOTOR NEURONE DISEASE PROGRESSES

Abstract

Objectives: The research built on a qualitative project conducted in 2012 around choices faced by people with Motor Neurone Disease (MND) at the end of their lives. The aim was to develop survey questions that could be asked of all people with MND about these choices to better understand the decisions and how ready people felt to be making them. Methods: Questions were developed to capture feedback from people living with MND to understand their care and support needs as the disease progresses. This was achieved via the following methods: o Data from an existing questionnaire was statistically analysed to evaluate which questions were of most value in terms of providing actionable feedback. o Themes that had emerged from existing qualitative work into end of life care also informed the question areas. Question areas included ease of talking about death and dying; choice at the end of life; and whether people living with MND would welcome a public debate on end of life issues. They were cognitively tested on people with MND to check for clarity and comprehension. These questions were added to an existing MND feedback questionnaire focussing on diagnosis and support needs, but included in a separate part of the survey, with a caveat warning respondents about the sensitive nature of the questions, with the option to skip them if preferred. A total of 2,933 people with MND were sent a pre-approach opt-out letter. Following the response from the letter (67 deceased notifications and 28 opt outs), 2,838 were invited to complete the survey. A further 131 notifications (102 deceased and 29 opt outs) were received throughout fieldwork. A response rate of 34% (951) was achieved. A mixed methodology approach was selected for implementing the survey. All contacts with an email address were sent an invitation, which contained a link to the online survey. The remaining sample who did not have a registered email address were sent a paper copy of the survey in the post. A reminder notification was sent two weeks after the initial invite to all non-responders Results: The top five areas that people living with MND identified as needing more information and support in were: - Information about end of life care options (42%, n = 222) - Information about treatments to help the final stages be as peaceful and dignified as possible (40%, n = 210) - Opportunity to discuss options for taking control at the end of life (33%, n = 173) - Options around organ donation or donation to research (30%, n = 157) - Information on how to talk about end of life issues with family members and friends (29%, n = 155) Conclusion: A response rate of 34% (951) was achieved making this the largest survey of people with MND (in the UK) to date, providing detailed feedback on services and support, in addition to what is important to those living with the disease. The research showed that people want to be able to talk about the choices they face at the end of their life but that in many cases they don't feel able to. Findings are being used in a number of ways, including: o Influencing policy change - a brief was provided to all MPs before the assisted dying debate in September 2015. o Informing on new National Institute for Health and Care Excellent guidelines for people with MND o The data is being used as evidence to ensure that providers assess and deliver services and equipment in a more anticipatory manner. Informing an award winning end of life guide for people with MND to help families and health and social care professionals discuss end of life issues with more ease.