Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.

BACKGROUND

There 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.

AIM

To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity.

DESIGN

This 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 PARTICIPANTS

Delphi 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.

RESULTS

Phase 1: Delphi survey ( = 82). Agreement increased from Kendall's  = 0.17 to  = 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 ( = 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.

CONCLUSIONS

This 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.