Table 1

Tool development and validation process summary

StepObjectiveMethodTimeline (months)Process
Stage 1: tool development
  1. Identify evidence-informed and best practice information for MND symptom management and quality of life issues

  2. Identify decision tool development processes

Literature review of:
  • MND symptom management

  • Quality of life issues

  • Decision tool development processes

  • User-centred design

  • Determine evidence base and user perspectives from literature

  • Gain ethics approval

BForm expert panel
  • Recruitment and selection of expert panel members from stakeholder groups

  • Identify user priority list of tools to be developed

  • Education of panel members on participation, role requirements and IPDAS criteria

CDevelopment of tool drafts
  • Expert panel consultation

  • Delphi process

  • Nomination of five highest priority tools

  • Develop tool drafts

  • Iterative consultation with panel members as development progresses

  • Feedback loop with panel members

DFinal review of draft tools
  • Expert panel review

  • Evaluation against IPDAS criteria

  • Consultation with panel members

  • IPDAS checklist

Stage 2: validation process
EValidation of tool prototypes
  • Expert panel agreement

  • Study team consensus

  • Signoff by panel members

  • Study team discussion

FRefinement and validation of tool development process
  • Feedback from panel members on development process

  • Documentation of development process

  • Validation of process by expert panel and study team

  • Formal mapping and documentation of the development process actually used in the study.

  • A draft of this document will be circulated to the expert panel.

  • The expert panel will be asked to give feedback on ways the process could have been improved.

  • The process will then be refined according to participant feedback.

  • The process will be documented for knowledge translation.

GKnowledge translation
  • Reporting to HREC

  • Reporting to funding body

  • Feedback to participants

  • Publication of study findings

  • Written reports

  • Newsletter to participants via email

  • Peer-reviewed journal publication

  • Seminar presentations

  • HREC, Human Research Ethics Committee; IPDAS, International Patient Decision Aids Standards; MND, motor neurone disease.