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Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol
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 manag...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BMJ Publishing Group
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823454/ https://www.ncbi.nlm.nih.gov/pubmed/27053272 http://dx.doi.org/10.1136/bmjopen-2015-010532 |
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author | Hogden, Anne Greenfield, David Caga, Jashelle Cai, Xiongcai |
author_facet | Hogden, Anne Greenfield, David Caga, Jashelle Cai, Xiongcai |
author_sort | Hogden, Anne |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-4823454 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
spelling | pubmed-48234542016-04-19 Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol Hogden, Anne Greenfield, David Caga, Jashelle Cai, Xiongcai BMJ Open Patient-Centred Medicine 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. BMJ Publishing Group 2016-04-06 /pmc/articles/PMC4823454/ /pubmed/27053272 http://dx.doi.org/10.1136/bmjopen-2015-010532 Text en Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/ This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ |
spellingShingle | Patient-Centred Medicine Hogden, Anne Greenfield, David Caga, Jashelle Cai, Xiongcai Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
title | Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
title_full | Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
title_fullStr | Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
title_full_unstemmed | Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
title_short | Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
title_sort | development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol |
topic | Patient-Centred Medicine |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4823454/ https://www.ncbi.nlm.nih.gov/pubmed/27053272 http://dx.doi.org/10.1136/bmjopen-2015-010532 |
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