Towards a core outcome set for post-stroke facial palsy: Results from an international e-Delphi study and online consensus meeting with professionals

ObjectiveTo initiate the development of an agreed core outcome set for post-stroke facial palsy, identifying which outcome domains should be measured in research and may inform clinical practice.DesignTwo online e-Delphi rounds followed by an online consensus meeting.SettingInternational, multi-disciplinary.ParticipantsClinicians and researchers working in post-stroke facial palsy.MethodsDelphi items were developed from existing literature, qualitative interviews with stroke survivors and patient/public involvement, then aligned with ICF levels. Participants completed two e-Delphi rounds rating outcome domains on a 1 to 9 GRADE scale: 7 to 9 'critical'; 1 to 3 'least important'. All domains were discussed at the consensus meeting and included in the final list if ≥70% of participants voted 'yes' to include the domain in the core outcome set.ResultsIn total, 156 Delphi questionnaires (round one, 101 participants from 16 countries; round two, 55 from 12 countries) were completed. Fifteen participants from 6 countries attended the consensus meeting. Three outcome domains were agreed for inclusion in the initial core outcome set: (1) facial movement and sensation, (2) everyday function, and (3) living with facial palsy.ConclusionsWe report the first internationally informed consensus between clinicians and researchers on 'what' outcome domains are important to measure for post-stroke facial palsy. We share these findings to encourage their measurement and to guide next steps. Our future work includes a separate consensus study, using a more inclusive methodology, on 'what' to measure with lived-experience stakeholders, and a systematic review on 'how' to measure these outcomes. COMET Initiative registration (December 2024): https://www.comet-initiative.org/Studies/Details/3295.