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Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol
Citation
Hogden, A and Greenfield, D and Caga, J and Cai, X, Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol, BMJ Open, 6, (4) Article e010532. ISSN 2044-6055 (2016) [Refereed Article]
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Copyright Statement
Published by the BMJ Publishing Group Limited. Licensed under Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) https://creativecommons.org/licenses/by-nc/4.0/
Official URL: https://bmjopen.bmj.com/content/6/4/e010532
DOI: doi:10.1136/bmjopen-2015-010532
Abstract
Introduction: Motor neuron disease (MND) is a
terminal, progressive, multisystem disorder. Well-timed
decisions are key to effective symptom management.
To date, there are few published decision support
tools, also known as decision aids, to guide patients in
making ongoing choices for symptom management
and quality of life. This protocol is to develop and
validate decision support tools for patients and families
to use in conjunction with health professionals in MND
multidisciplinary care. The tools will inform patients
and families of the benefits and risks of each option,
as well as the consequences of accepting or declining
treatment.
Methods and analysis: The study is being
conducted from June 2015 to May 2016, using a
modified Delphi process. A 2-stage, 7-step process
will be used to develop the tools, based on existing
literature and stakeholder feedback. The first stage will
be to develop the decision support tools, while the
second stage will be to validate both the tools and the
process used to develop them. Participants will form
expert panels, to provide feedback on which the
development and validation of the tools will be based.
Participants will be drawn from patients with MND,
family carers and health professionals, support
association workers, peak body representatives, and
MND and patient decision-making researchers.
Ethics and dissemination: Ethical approval for the
study has been granted by Macquarie University
Human Research Ethics Committee (HREC), approval
number 5201500658. Knowledge translation will be
conducted via publications, seminar and conference
presentations to patients and families, health
professionals and researchers
Item Details
| Item Type: | Refereed Article |
|---|---|
| Keywords: | decision-making, person-centred care, motor neurone disease, decision support tools, multidisciplinary care |
| Research Division: | Health Sciences |
| Research Group: | Health services and systems |
| Research Field: | Health services and systems not elsewhere classified |
| Objective Division: | Health |
| Objective Group: | Provision of health and support services |
| Objective Field: | Palliative care |
| UTAS Author: | Hogden, A (Dr Anne Hogden) |
| ID Code: | 135918 |
| Year Published: | 2016 |
| Web of Science® Times Cited: | 9 |
| Deposited By: | Australian Institute of Health Service Management |
| Deposited On: | 2019-11-20 |
| Last Modified: | 2022-07-06 |
| Downloads: | 15 View Download Statistics |
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