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 systema tic 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
Namisango, E., Bristowe. K., Murtagh, F., Downing, J., Powell, R., Abas, M., ... & Harding, R. (2020). Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative study. Palliative Medicine, 34 (3); 319–335.
Coombes, L., Roach, A., Braybrook, D., Bristowe, K., Ellis-Smith, C., Bluebond-Langner, M., ... & Harding, R. (2020). Priority outcomes for children and young people with life-limiting conditions: an in-depth qualitative interview study
Coombes, L., Ellis-Smith, C., Bristowe, K., Aworinde, J., Fraser, L., Downing, J., ... & Harding, R. (2020) Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of optimal recall period, response scale format and administration modality.
Who is involved?
Principal Investigator: Professor Richard Harding
Research Associate: Dr Debbie Braybrook
PhD Student: Lucy Coombes
(Quantitative) Research Assistant: Daney Harðardóttir
(Mixed Method) Research Assistant: Hannah Scott
We are working with several sites across the UK including: King’s College Hospital, Great Ormond Street, The Evelina GSTT, The Royal Marsden, Leeds Teaching Hospital, Martin House Children’s Hospice, Addenbrookes Hospital, East Anglia Children’s Hospices and Northern Ireland Children’s Hospice.
Our steering group is made up of a large expert group of researchers, clinicians and patient and public involvement members: Dr AK Anderson, Lydia Bate, Professor Myra BluebondLangner, Dr Katherine Bristowe, Dr Rachel Burman, Lizzie Chambers, Professor Sir Alan Craft, Dr Finella Craig, Professor Julia Downing, Dr Clare Ellis-Smith, Professor Bobbie Farsides, Professor Lorna Fraser, Professor Sara Fovargue, Dr Ann Goldman, Jane Green, Julie Hall-Carmichael, Professor Irene Higginson, Dr Michelle Hills, Dr Jo Laddie, Angela Logun, Dr Steve Marshall, Dr Linda Maynard, Professor Fliss Murtagh, Dr Eve Namisango, Dr Sue Picton, Anna Roach, Dr Pat Sartori, Professor Gao Wei 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
(Quantitative) Research Assistant: Daney Harðardóttir: email@example.com
(Mixed Method) Research Assistant: Hannah Scott:firstname.lastname@example.org
This study is funded by the European Research Council