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Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol
  1. Rose Maunsell1,
  2. Suzanne Bloomfield2,
  3. Clare Erridge3,
  4. Claire Foster1,
  5. Maggi Hardcastle4,
  6. Anne Hogden5,
  7. Alison Kidd6,
  8. Dominika Lisiecka7,
  9. Christopher J McDermott8,
  10. Karen Morrison9,
  11. Alejandra Recio-Saucedo10,
  12. Louise Rickenbach11,
  13. Sean White12,
  14. Peter Williams13,
  15. Sally J Wheelwright1
  1. 1Health Sciences, University of Southampton, Southampton, UK
  2. 2Community Nursing, Countess Mountbatten Hospice, Southampton, UK
  3. 3MND Care Centre, Southampton General Hospital, Southampton, UK
  4. 4Physiotherapy, Rowans Hospice, Waterlooville, Hampshire, UK
  5. 5Australian Institute of Health Service Management, University of Tasmania, Sydney, New South Wales, Australia
  6. 6Carer Representative, University of Southampton, Southampton, Hampshire, UK
  7. 7School of Allied Health, University of Limerick, Limerick, Ireland
  8. 8Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK
  9. 9Faculty of Medicine, University of Southampton, Southampton, UK
  10. 10NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton, Southampton, Hampshire, UK
  11. 11Motor Neurone Disease Association, Northampton, Northamptonshire, UK
  12. 12Dietetic Department, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  13. 13Patient Representative, University of Southampton, Southampton, UK
  1. Correspondence to Dr Sally J Wheelwright; S.J.Wheelwright{at}soton.ac.uk

Abstract

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

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Twitter @@rosemaunsellRD, DiAMoND Study @DiAMoNDstudy_

  • 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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