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

IntroductionMotor 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 gastros...

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Bibliographic Details
Published in:	BMJ open Vol. 9; no. 12; p. e032364
Main Authors:	Maunsell, Rose, Bloomfield, Suzanne, Erridge, Clare, Foster, Claire, Hardcastle, Maggi, Hogden, Anne, Kidd, Alison, Lisiecka, Dominika, McDermott, Christopher J, Morrison, Karen, Recio-Saucedo, Alejandra, Rickenbach, Louise, White, Sean, Williams, Peter, Wheelwright, Sally J
Format:	Journal Article
Language:	English
Published:	England BMJ Publishing Group LTD 18-12-2019 BMJ Publishing Group
Subjects:	Caregivers Caregivers - psychology Clinical decision making Decision making Decision Making, Shared Decision Support Techniques Dysphagia Enteral nutrition Feasibility Studies Gastrostomy - psychology Humans Medical prognosis Motor Neuron Disease - complications Motor Neuron Disease - psychology Motor neurone disease Neurology Ostomy Patients Pilot Projects Quality of Life United Kingdom > UK protocols & guidelines motor neuron disease adult palliative care nutrition & dietetics
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Summary:	IntroductionMotor 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 analysisA 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 disseminationEthical 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.
Bibliography:	ObjectType-Article-2 SourceType-Scholarly Journals-1 ObjectType-Undefined-1 ObjectType-Feature-3 content type line 23
ISSN:	2044-6055 2044-6055
DOI:	10.1136/bmjopen-2019-032364