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Study timeline
| Key project milestones | Start date | End date |
| Systematic review | May 2017 | February 2018 |
| Patient and family member interviews | October 2017 | February 2018 |
| Delphi consensus and nested methodological study | April 2018 | March 2019 |
| Consensus meeting | June 2019 | June 2019 |
| Process evaluation patient/family interviews | February 2018 | March 2020 |
| Consensus on measures | September 2019 | March 2020 |
| Knowledge translation/dissemination | June 2019 onwards |
