title: Development of patient decision support tools for motor neuron disease using stakeholder consultation: a study protocol.
abstract: BACKGROUND
  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
  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.
  
  
  BACKGROUND
  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.
authors.affiliation: Centre for Healthcare Resilience and Implementation Science, Australian Institute of Health Innovation, Macquarie University, Sydney, New South Wales, Australia.
authors.forename: Anne
authors.initials: A
authors.lastname: Hogden
authors.affiliation: Centre for Healthcare Resilience and Implementation Science, Australian Institute of Health Innovation, Macquarie University, Sydney, New South Wales, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Greenfield
authors.affiliation: Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Jashelle
authors.initials: J
authors.lastname: Caga
authors.affiliation: School of Computer Science and Engineering, University of New South Wales, Sydney, New South Wales, Australia.
authors.forename: Xiongcai
authors.initials: X
authors.lastname: Cai
mesh_terms: D001315:Australia; D017028:Caregivers; D002755:Choice Behavior; D003657:Decision Making; D003661:Decision Support Techniques; D006282:Health Personnel; D006801:Humans; D016472:Motor Neuron Disease / Q000523:psychology* / Q000628:therapy; D010358:Patient Participation / Q000379:methods*; D011788:Quality of Life; D012017:Referral and Consultation; D012107:Research Design
keywords: decision aids; multidisciplinary care; patient-centred care; shared decision-making