Maunsell, R and Bloomfield, S and Erridge, C and Foster, C and Hardcastle, M and Hogden, A and Kidd, A and Lisiecka, D and McDermott, CJ and Morrison, K and Recio-Saucedo, A and Rickenbach, L and White, S and Williams, P and Wheelwright, SJ, Developing a web-based patient decision aid for gastrostomy in motor neuron disease: A study protocol, BMJ Open, 9, (12) Article e032364. ISSN 2044-6055 (2019) [Refereed Article]
© Author(s) (or their employer(s)) 2019. Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) http://creativecommons.org/licenses/by/4.0/
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.
|Item Type:||Refereed Article|
|Keywords:||adult palliative care, motor neuron disease, nutrition & dietetics, protocols & guidelines|
|Research Division:||Biomedical and Clinical Sciences|
|Research Field:||Neurology and neuromuscular diseases|
|Objective Group:||Clinical health|
|Objective Field:||Clinical health not elsewhere classified|
|UTAS Author:||Hogden, A (Dr Anne Hogden)|
|Deposited By:||Australian Institute of Health Service Management|
|Downloads:||1 View Download Statistics|
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