Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol

Area of Science:

• Neurology
• Patient Decision Support

Background:

• Motor neuron disease (MND) is a progressive, incurable neurological condition.
• Patients with MND face complex, time-sensitive decisions, including gastrostomy feeding.
• No current decision aids (DAs) exist in the UK for MND gastrostomy feeding decisions.

Purpose of the Study:

• To develop and pilot a patient decision aid (DA) for gastrostomy feeding in MND.
• To provide evidence-based information on risks and benefits of gastrostomy placement and feeding.
• To enable patients to make informed decisions aligned with their values.

Main Methods:

• A 24-month, two-phase development process adhering to International Patient Decision Aid Standards.
• Phase 1: Literature reviews, stakeholder interviews, and surveys to define content and presentation.
• Phase 2: Iterative development and revision of a prototype DA based on stakeholder feedback (MND patients, carers, healthcare professionals).

Main Results:

• Ethical approval obtained from West of Scotland Research Ethics Service (ref 19/WS/0078).
• Study findings will be disseminated via academic/non-academic publications, conferences, and online platforms.
• A subsequent feasibility study will assess the DA's acceptability, practicality, and potential benefit.

Conclusions:

• A novel patient decision aid for gastrostomy feeding in MND is being developed.
• The DA aims to improve shared decision-making and patient-centered care for individuals with MND.
• Future research will evaluate the DA's real-world application and impact.