Exploring how the multi-disciplinary team supports people with Motor Neuron Disease making the decision to have gastrostomy feeding tube placed.

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.