Children's Palliative Care Outcome Scale (C-POS)
Date opened: March 2019
Why is this research important?
Person-centred care is a core health value of modern health care. The overarching aim of C-POS is to develop and validate a person-centred outcome measure (PCOM) for children, young people (CYP) and their families affected by life-limiting and life-threatening conditions (LLLTC). A recent systematic review has highlighted that no measures suitable for use in this population currently exist. In addition, development of such a measure has been highlighted as an international research priority. This novel study will draw together a unique multidisciplinary collaboration and seek to engage children within the research process, rather than relying on proxy data. Currently children and young people are often neglected in the research process and this study hopes to change this.
The C-POS study addresses a current gap in both methods and evidence: repeated reviews and policies have called for scientific advancement to develop, validate and implement PCOMs for CYP and their families facing LLLTC. Currently no valid tool exists, due to the complexities of self-report among children who often have profound communication difficulties, as well as sensitivities around the subject matter, and lack of evidence on their symptoms and concerns. Therefore, this population have been neglected in terms of research activity and evidence. This study provides a unique opportunity to conduct South-North scientific development through multidisciplinary research informed by our novel African study which developed a PCOM for this population.
What does this study involve?
AIM: To develop a person-centred outcome measure that can be used by CYP and their families affected by LLLTC, and to test its psychometric properties. We will also be developing implementation guidance once the measure is finalised.
Coombes L, Wiseman T, Lucas G, Sangha A and Murtagh F (2016). Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliative Medicine, 30 (10); 935-949.
Harding R, Chambers L and Bluebond-Langner (2019) Advancing the science of outcome measurement in paediatric palliative care. International Journal of Palliative Nursing, 25 (2); 72-79.
Namisango, E., Bristowe, K., Allsop, M. J., Murtagh, F. E., Abas, M., Higginson, I. J., ... & Harding, R. (2018). Symptoms and concerns among children and young people with life-limiting and life-threatening conditions: A systematic review highlighting meaningful health outcomes. The Patient-Patient-Centered Outcomes Research, 1-41
Who is involved?
Principal Investigator: Professor Richard Harding
Research Associate: Dr Debbie Braybrook
PhD Student: Lucy Coombes
Study Coordinator: Anna Roach
We are recruiting from 6 NHS sites and 3 children’s hospices from across the UK: King’s College Hospital (PI: Dr Rachel Burman), Great Ormond Street (PI: Dr Finella Craig), The Evelina GSTT (PI: Dr Joanna Laddie), The Royal Marsden (PI: Dr A K Anderson), Leeds Teaching Hospital (PI: Dr Sue Picton), Martin House Children’s Hospice (PI: Dr Sue Picton), Addenbrookes Hospital (PI: Dr Pat Sartori), East Anglia Children’s Hospices (PI: Dr Linda Maynard) and Northern Ireland Children’s Hospice (PI: Deborah Burns).
Our steering group is made up of a large expert group of researchers, clinicians and patient and public involvement members: Jane Green, Angela Logun, Lydia Bate, Professor Sir Alan Craft, Professor Julia Downing, Professor Myra Bluebond-Langner, Professor Lorna Fraser, Professor Fliss Murtagh, Professor Bobbie Farsides, Dr Ann Goldman, Lizzie Chambers, Dr Rachel Burman, Dr AK Anderson, Dr Jo Laddie, Dr Finella Craig, Dr Linda Maynard, Dr Eve Namisango, Professor Sara Fovargue, Dr Katherine Bristowe, Dr Steve Marshall, Dr Clare Ellis-Smith, Professor Irene Higginson, Professor Gao Wei, Dr Sue Picton, Dr Pat Sartori, Dr Michelle Hills, Julie Hall-Carmichael and we are working with Together For Short Lives.
Principal Investigator: Professor Richard Harding: firstname.lastname@example.org
Research Associate: Dr Debbie Braybrook: email@example.com
PhD Student: Lucy Coombes: firstname.lastname@example.org
Study Coordinator: Anna Roach: email@example.com
This study is funded by the European Research Council