@article{c7d3bc25e8fb44c5bde1d8f7417bf9fa,
title = "Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children{\textquoteright}s research involvement group and expert item generation",
abstract = "Background: There is no validated outcome measure for use in children{\textquoteright}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{\textquoteright}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{\textquoteright}s advisory group: young people age 10–20 years. Item generation meeting: bereaved parents, academics and clinicians. Results: Phase 1: Delphi survey (n = 82). Agreement increased from Kendall{\textquoteright}s W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen{\textquoteright}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 {\textquoteleft}normal life{\textquoteright} 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.",
keywords = "children, Delphi survey, Outcome assessment, palliative care, public participation",
author = "Lucy Coombes and Daney Har{\dh}ard{\'o}ttir and Debbie Braybrook and Scott, {Hannah May} and Katherine Bristowe and Clare Ellis-Smith and Fraser, {Lorna K.} and Julia Downing and Myra Bluebond-Langner and Murtagh, {Fliss E.M.} and Richard Harding",
note = "Funding Information: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: CPOS was funded by a European Research Council{\textquoteright}s Consolidator Award [Grant ID: 772635] with the overall aim to develop and validate a person-centred outcome measure for children, young people and their families affected by life-limiting & life-threatening condition. Principal Investigator: Richard Harding. This article reflects only the authors{\textquoteright} views and the European Research Council is not liable for any use that may be made of the information contained therein. Fliss Murtagh is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care. Hannah Scott, King{\textquoteright}s College London, is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed are those of the author[s] and not necessarily those of the NIHR or the Department of Health and Social Care. Funding Information: The Children{\textquoteright}s Palliative care Outcome Scale (CPOS) Study Steering Group members are: AK Anderson, Jo Bayly, Lydia Bates (PPI), Debbie Box, Rachel Burman, Lizzie Chambers, Alan Craft, Finella Craig, Aislinn Delaney, Jonathan Downie, Sara Fovargue, Jane Green (PPI), Jay Halbert, Julie Hall-Carmichael, Irene Higginson, Michelle Hills, Mevhibe Hocaoglu, Vanessa Holme, Gill Hughes, Joanna Laddie, Angela Logun (PPI), Eve Malam, Steve Marshall, Linda Maynard, Andrina McCormack, Catriona McKeating, Lis Meates, Eve Namisango, Veronica Neefjes, Cheryl Norman, Susan Picton, Christina Ramsenthaler, Anna Roach, Ellen Smith, Michelle Ward, Frances Waite, Mark Whiting. This study is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. Publisher Copyright: {\textcopyright} The Author(s) 2023.",
year = "2023",
month = dec,
doi = "10.1177/02692163231205126",
language = "English",
volume = "37",
pages = "1509--1519",
journal = "Palliative Medicine",
issn = "0269-2163",
publisher = "Sage Publications",
number = "10",
}