Objective Person-centred care is a core health value of modern health care. The overarching aim of C-POS (Children's Palliative care Outcome Scale) is to develop and validate a person-centred outcome measure for children, young people (CYP) and their families affected by life-limiting & life-threatening conditions (LLLTC). International systematic reviews, and clinical guides have highlighted that currently none exists. This novel study will draw together a unique multidisciplinary collaboration to pioneer new methods, enabling engagement in outcome measurement by a population currently neglected in research. C-POS builds on an international program of work. The sequential mixed methods will collect substantive data through objectives to determine i) the primary concerns of CYP and their families affected by LLLTC & preferences to enable participation in ethical person-centred measurement (n=50); ii) view of clinicians and commissioners on optimal implementation methods (national Delphi study); iii) a systematic review of current data collection tools for CYP regardless of condition; iv) integration of objectives i-iii to develop a tool (C-POS) with face and content validity; v) cognitive interviews to determine interpretability (n=40); vi) longitudinal cohort of CYP and families to determine test-retest reliability, internal consistency, construct validity and responsiveness (n=151); vii) development of resources for routine implementation viii) translation and interpretation protocols for international adoption. C-POS is an ambitious study that, for the first time, will enable measurement of person-centred outcomes of care. This will be a turning point in the scientific study of a hitherto neglected group. Programme(s) H2020-EU.1.1. - EXCELLENT SCIENCE - European Research Council (ERC) Main Programme Topic(s) ERC-2017-COG - ERC Consolidator Grant Call for proposal ERC-2017-COG See other projects for this call Funding Scheme ERC-COG - Consolidator Grant Coordinator KING'S COLLEGE LONDON Net EU contribution € 1 696 410,00 Address Strand WC2R 2LS London United Kingdom See on map Region London Inner London — West Westminster Activity type Higher or Secondary Education Establishments Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 Beneficiaries (3) Sort alphabetically Sort by Net EU contribution Expand all Collapse all KING'S COLLEGE LONDON United Kingdom Net EU contribution € 1 696 410,00 Address Strand WC2R 2LS London See on map Region London Inner London — West Westminster Activity type Higher or Secondary Education Establishments Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 UNIVERSITY COLLEGE LONDON United Kingdom Net EU contribution € 59 062,50 Address Gower street WC1E 6BT London See on map Region London Inner London — West Camden and City of London Activity type Higher or Secondary Education Establishments Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00 THE UNIVERSITY OF SUSSEX United Kingdom Net EU contribution € 44 347,50 Address Sussex house falmer BN1 9RH Brighton See on map Region South East (England) Surrey, East and West Sussex Brighton and Hove Activity type Higher or Secondary Education Establishments Links Contact the organisation Opens in new window Website Opens in new window Participation in EU R&I programmes Opens in new window HORIZON collaboration network Opens in new window Other funding € 0,00
