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

Developing a web-based patient decision aid for gastrostomy in motor neurone disease: A study protocol
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.
2044-6055
Maunsell, Rose
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Bloomfield, Suzanne
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Erridge, Clare
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Foster, Claire
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Hardcastle, Maggi
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Hogden, Anne
003daf55-0923-4e4c-b347-9a5f34847883
Kidd, Alison
23839e45-227e-4ed1-a2aa-03967f240920
Lisiecka, Dominika
8d035d36-b124-4cc7-8112-a74eed042448
McDermott, Christopher J.
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Morrison, Karen
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Recio Saucedo, Alejandra
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Rickenbach, Louise
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White, Sean
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Williams, Peter
ade5fc98-0f00-4c0a-85dd-050da1537fcd
Wheelwright, Sally
2df90681-fb0a-4871-ae7d-75c88b35024b
Maunsell, Rose
42210e32-3bc0-4270-9b71-3d0a5fbc2ce8
Bloomfield, Suzanne
f72128df-166b-4f8c-8c5f-ba68134f8c93
Erridge, Clare
173920f7-e8c1-4f17-a065-71ac0571ed4d
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Hardcastle, Maggi
f96c1170-6e40-4082-8d96-ae49b3ebab88
Hogden, Anne
003daf55-0923-4e4c-b347-9a5f34847883
Kidd, Alison
23839e45-227e-4ed1-a2aa-03967f240920
Lisiecka, Dominika
8d035d36-b124-4cc7-8112-a74eed042448
McDermott, Christopher J.
64925ee2-7063-4135-89b6-b3ce1068a7c2
Morrison, Karen
f00890f0-2fde-4dbd-a73b-7422e1b0ede8
Recio Saucedo, Alejandra
d05c4e43-3399-466d-99e0-01403a04b467
Rickenbach, Louise
13be4cff-e0f6-4400-9341-f44bbe4e3d74
White, Sean
3047670e-98bb-4c58-9679-6a19dcbfc1da
Williams, Peter
ade5fc98-0f00-4c0a-85dd-050da1537fcd
Wheelwright, Sally
2df90681-fb0a-4871-ae7d-75c88b35024b

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 and Wheelwright, Sally (2019) Developing a web-based patient decision aid for gastrostomy in motor neurone disease: A study protocol. BMJ Open, 9, [e032364]. (doi:10.1136/bmjopen-2019-032364).

Record type: Article

Abstract

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.

Text
DEVELOPING A WEB-BASED PATIENT DECISION AID FOR GASTROSTOMY IN MND - accepted - Accepted Manuscript
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More information

Accepted/In Press date: 14 November 2019
e-pub ahead of print date: 18 December 2019

Identifiers

Local EPrints ID: 436031
URI: http://eprints.soton.ac.uk/id/eprint/436031
ISSN: 2044-6055
PURE UUID: cce0010b-37cf-437f-938a-a314f315238f
ORCID for Rose Maunsell: ORCID iD orcid.org/0000-0003-4106-6519
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378
ORCID for Karen Morrison: ORCID iD orcid.org/0000-0003-0216-5717
ORCID for Alejandra Recio Saucedo: ORCID iD orcid.org/0000-0003-2823-4573
ORCID for Sally Wheelwright: ORCID iD orcid.org/0000-0003-0657-2483

Catalogue record

Date deposited: 26 Nov 2019 17:30
Last modified: 18 Feb 2021 17:38

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