• Lucy Coombes, Daney Harðardóttir, Debbie Braybrook, Hannah May Scott, Katherine Bristowe, Clare Ellis-Smith, Lorna K Fraser, Julia Downing, Myra Bluebond-Langner, Fliss Em Murtagh, and Richard Harding.
• King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK.
• Palliat Med. 2023 Dec 1; 37 (10): 150915191509-1519.

BackgroundThere is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity.AimTo gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity.DesignThis study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person's advisory group was also consulted on priority outcomes.Setting And ParticipantsDelphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person's advisory group: young people age 10-20 years. Item generation meeting: bereaved parents, academics and clinicians.ResultsPhase 1: Delphi survey (n = 82). Agreement increased from Kendall's W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen's kappa 0.13). Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns. Advisory group: Children (n = 22) prioritised items related to living a 'normal life' in addition to items prioritised by adult participants. Phase 2: Five age/developmental stage appropriate child and proxy-reported versions of C-POS, containing 13 items, were drafted.ConclusionsThis study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.

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