Title: Exploring how the multi-disciplinary team supports people with Motor Neuron Disease making the decision to have gastrostomy feeding tube placed.
Funder: Health Education England

Abstract: Background Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis (ALS)), is a progressive neurological condition leading to the degeneration of the motor system and resulting loss of function. (4). People with MND (pwMND) face significant challenges to taking adequate nutrition, resulting in a high incidence of malnutrition that is an independent poor prognostic indicator (5). National guidelines recommend early discussions about gastrostomy feeding tube placement with pwMND (6). Multiple patient, carer and health service factors have been reported that complicate decision making and lead to pwMND delaying making decisions (7). A delay in gastrostomy placement is associated with poorer nutritional and prognostic outcomes (8). The MND multi-disciplinary team (MDT) has been identified as a source of expertise and decision support, making them an important stakeholder in the decision making process (9). pwMND have multiple discussions about gastrostomy placement with a range of professional roles in the MDT, but breakdowns in communication between professionals have been reported (10). Little is known about how the MDT, as a unit of decision support, coordinates and delivers this important care function that impacts on how, what and when decisions are made about gastrostomy placement. With the timing of gastrostomy placement effecting patient outcomes, it is important that pwMND are supported to make timely, well informed decisions.Research Question How do MND MDT's meet the decisional needs of people with MND considering gastrostomy placement? Aim To understand how MND MDT's can best meet the decisional needs of pwMND considering gastrostomy placement. Objectives Synthesise the evidence in relation to how MDTs support pwMND making decisions about clinical interventions. Establish the current practice of MND MDT's in the UK when supporting pwMND considering gastrostomy placement. Explore the real-world process of decision making about gastrostomy placement in the context MND MDT care provision. Make recommendations about how the MND MDT can meet the decisional needs of pwMND considering gastrostomy placement.Methods The findings from a qualitative evidence synthesis and national survey of MND MDT decision support practice, feed into the design of a multiple case study, involving 3 MND centres (11). Data collection methods will include: direct observation; documentation review; evaluation of decision quality; patient, carer and healthcare professional interviews, and MDT focus groups. The findings will inform the development of a model of MDT decision support and in collaboration with participants from the case studies, a MND MDT decision support guideline. Anticipated impact and dissemination Papers will be published in peer reviewed journals reporting the methods used, qualitative evidence synthesis, survey, and multiple case study, in addition to abstracts being submitted to relevant neurology and dietetic conferences. The guidelines will be disseminated to all the MND centres in the UK and endorsement will be sought from the MND Association to optimise healthcare professional and public viewership. The guidelines will provide pragmatic recommendations for how to best meet pwMND decisional needs. Moving forward the contextual research findings will inform the design, implementation and evaluation of decision support interventions about gastrostomy placement and other interventions.

Lay abstract: Background Motor Neuron Disease (MND), leads to the nerves travelling towards muscles not working properly and progressive muscle weakness. People with MND experience challenges, including difficulties swallowing, limiting the ability to take enough food and drink. They are asked to make multiple decisions about treatments, with no hope of a cure. One such choice is whether to have gastrostomy feeding tube, a narrow plastic tube placed directly into the stomach, to allow nutrition to be given when unable to take enough by mouth. Research has found that people with MND find it difficult to make the decision to have a gastrostomy. Increased weight loss prior to gastrostomy placement is linked to not living as long. MND care is delivered by nurses, doctors and therapists, working as a multi-disciplinary team (MDT). A person with MND can receive support in making decisions about gastrostomy placement from all of the MDT. Little is known about how to support people making this difficult decision. The aim of this research is to explore how people with MND can be supported to make decisions about gastrostomy placement by the MND MDT.Research planThe findings from published research that studied how the MDT supports people with MND to make decisions about treatment options, will be reviewed. Following this, a survey will be sent to UK MND centres, to describe how MDT's support decision making. Next, a multiple case study approach involving 3 MND centres, will allow an in-depth view of how the MND MDT helps people to make decisions about gastrostomy placement. The data collected on each site will include (also summarised in figure 2 in uploads): A review of guidelines, care pathways, and methods of communication between healthcare professionals and with patients. Directly observe in practice healthcare professionals, people with MND and their families. People with MND and their family members will complete questionnaires, recording how involved they are in the decision-making process. Interviews with people with MND, their families and healthcare professionals will explore experience of the decision-making process. Group discussion with healthcare professionals exploring their team's approach to supporting people with MND making decisions.The case study analysis will provide a detailed description of how decisions are made about gastrostomy placement in real-life clinical practice. The findings will inform the design of a model by which people with MND are supported to make decisions by the MND MDT and identify opportunities to support decision-making.The findings will be discussed at a workshop on each case study site, attended by those people with MND, their families and healthcare professionals who participated in the study. The workshops will be used to develop MND MDT guidelines to support people with MND making decisions about gastrostomy placement. The research findings and guideline will improve patient involvement in their care and decisions. Patient and public involvement (PPI) Feedback from several PPI groups has informed helped identify the target population; research methods; and recruitment. Examples include helping refine the research question, aims and objectives; and to develop this plain english summary. People with MND with lived experience of making decisions about gastrostomy placement will be collaborated with at throughout the project including interpreting the study findings and developing plan to implement the guideline into practice. Sharing the findingsPublications will be submitted to academic journals and presented at international and national conferences or study events. Lay summaries in written and graphical format will be shared via the MND Association to ensure people with MND can act on the findings and guidelines. Opportunities will be taken to present to people living with MND at local and national MND Association events.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL