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

Introduction: Motor neurone disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids to support patients making this decision in the UK. This study will develop and pilot a patient decision aid to: provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding; and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them. Methods and analysis:A two phase process, observing the International Patient Decision Aid Standards (IPDAS), will be used to develop the decision aid, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the decision aid, and explore the best way to present this. In the second phase, a prototype decision aid will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals (HCPs) working with them. Ethics and dissemination:Ethical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow, to explore the acceptability and practicality of the decision aid for patients, carers and HCPs in practice and to assess whether the decision aid shows promise of being beneficial for the intended population.