Development and pilot testing of a web-based decision aid for people with motor neurone disease considering starting or stopping non-invasive ventilation

Non-invasive ventilation (NIV) can offer patients with motor neurone disease additional survival and improved quality of life but the decision to use it can be complex. This project will develop an evidence-based, patient-facing, web-based decision aid toolkit to help patients living with motor neurone disease decide whether to start and stop non-invasive ventilation.

The clinical research team at SITraN are leading the development of the evidence base that will guide these difficult decisions but patients and carers should be offered an active role in decision making. We have produced information websites using co-design which can support decision making (e.g. www.myniv.mymnd.org.uk) but these can be improved by placing them within decision aids (DA). DAs help patients make informed choices by presenting evidence-based information, communicating the risks and benefits associated with each option, checking understanding and clarifying personal values and preferences. A DA can help patients make a decision about whether these decisions are congruent with their values and what the implications may be and provide a framework for discussion with family members and clinicians.

Project objectives
1) Draw together the evidence base and extant resources and also the theoretical underpinning of Decision aidss, using standard methods including a literature review.
2) Explore personal experiences, information needs, timing and presentation of information using qualitative methods including interviews and focus groups.
3) Synthese the findings using a framework analysis approach and then prioritise content for the decision aid using the MoSCoW prioritisaition process.
4) Produce a prototype toolkit including a web-based decision aid and seeking feedback from study participants face-to-face and online (alpha testing). Following review of feedback, produce a second version.
5) Test this toolkit with new patients, carers and clinicians (beta testing) using the “think aloud” methods.
6) Conduct further beta testing and improvements and produce the final prototype.
7) Disseminate the tool widely for use within MND services.