Coombes, Lucy http://orcid.org/0000-0002-7833-1016
Harðardóttir, Daney
Braybrook, Debbie
Roach, Anna
Scott, Hannah
Bristowe, Katherine
Ellis-Smith, Clare
Downing, Julia
Bluebond-Langner, Myra
Fraser, Lorna K.
Murtagh, Fliss E. M.
Harding, Richard
Funding for this research was provided by:
H2020 European Research Council (772635)
Article History
Accepted: 29 March 2023
First Online: 23 May 2023
Declarations
:
: The authors have no competing interests to declare.
: CPOS was funded by a European Research Council’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 and life-threatening conditions. Richard Harding is the Principal Investigator. This article reflects only the authors’ views, and the European Research Council is not liable for any use that may be made of the information contained therein. Fliss Murtagh is an 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.
: Ethical approval was granted by the Bloomsbury research ethics committee (HRA:19/LO/0033).
: Participants over 16 years old provided written informed consent. Those with parental responsibility provided written informed consent for participants < 16 years. Those < 16 years provided written assent.
: All authors have reviewed this version and consent to publication.
: Due to the nature of the research, supporting data are not available.
: Not applicable.
: All authors: conception and design of the work. LC, DB and AR: data collection. LC, DB, AR, DH and HS: data analysis. All authors: interpretation of data. LC and DH: draft of paper. All authors: critical review and revision of article.