Introduction Motor neuron 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 (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA 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, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals 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 DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population.
- motor neuron disease
- nutrition & dietetics
- adult palliative care
- protocols & guidelines
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Contributors All of the named authors meet the ICMJE criteria for authorship and have contributed to the paper as follows: conception of the work: SJW; design of the work, including the study protocol, critical revision of the protocol manuscript, final approval of the version to be published: SJW, RM, AH, SB, CF, AR-S, CJM, CE, LR, DL, SW, AK, PW, MH, KM; drafting of the protocol manuscript: RM, SJW.
Funding This work was supported by Marie Curie and the Motor Neurone Disease Association grant numbers: MCRGS-20171219-8005 and 963-794, respectively.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Participant information sheets, consent forms, recruitment advertisements and general practitioner letters were also approved. All amendments to study documents will be submitted in IRAS for HRA and REC approval.
Provenance and peer review Not commissioned; externally peer reviewed.
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