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


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Hogden, A ORCID: 0000-0002-4317-7960, Greenfield, D, Caga, J and Cai, X 2019 , 'Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol' , BMJ Open , pp. 1-8 , doi: 10.1136/bmjopen-2015-010532.

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Introduction: Motor neuron disease (MND) is aterminal, progressive, multisystem disorder. Well-timeddecisions are key to effective symptom management.To date, there are few published decision supporttools, also known as decision aids, to guide patients inmaking ongoing choices for symptom managementand quality of life. This protocol is to develop andvalidate decision support tools for patients and familiesto use in conjunction with health professionals in MNDmultidisciplinary care. The tools will inform patientsand families of the benefits and risks of each option,as well as the consequences of accepting or decliningtreatment.Methods and analysis: The study is beingconducted from June 2015 to May 2016, using amodified Delphi process. A 2-stage, 7-step processwill be used to develop the tools, based on existingliterature and stakeholder feedback. The first stage willbe to develop the decision support tools, while thesecond stage will be to validate both the tools and theprocess used to develop them. Participants will formexpert panels, to provide feedback on which thedevelopment and validation of the tools will be based.Participants will be drawn from patients with MND,family carers and health professionals, supportassociation workers, peak body representatives, andMND and patient decision-making researchers.Ethics and dissemination: Ethical approval for thestudy has been granted by Macquarie UniversityHuman Research Ethics Committee (HREC), approvalnumber 5201500658. Knowledge translation will beconducted via publications, seminar and conferencepresentations to patients and families, healthprofessionals and researchers

Item Type: Article
Authors/Creators:Hogden, A and Greenfield, D and Caga, J and Cai, X
Keywords: decision-making, person-centred care, motor neurone disease, decision support tools, multidisciplinary care
Journal or Publication Title: BMJ Open
Publisher: B M J Group
ISSN: 2044-6055
DOI / ID Number: 10.1136/bmjopen-2015-010532
Copyright Information:

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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