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Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol


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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Published by the BMJ Publishing Group Limited. Licensed under Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0)

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DOI: doi:10.1136/bmjopen-2015-010532


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
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