Skip to main content
Back to King's College London homepage
Health

C-POS: Children’s Palliative care Outcome Scale

Person-centred care is a core health value of modern health care. The overarching aim of the Children's Palliative care Outcome Scale (C-POS) is to develop and validate a person-centred outcome measure for children and young people and their families affected by life-limiting and life-threatening conditions. A recent systematic review has highlighted that no measures suitable for use in this population currently exist. In addition, the 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 life-limiting and life-threatening conditions. Currently, no such 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 has so far been neglected in terms of research activity and evidence.

Clinical partners

Across the three phases of the C-POS study we have had support from a large number of clinical sites and local Principal Investigators. We are incredibly grateful and C-POS would not be possible without their ongoing engagement.

Aims

C-POS aims to develop, validate, and implement a person- and family-centred outcome measure that can be used by children and young people and their families affected by life-limiting and life-threatening conditions. The study will identify children and young people, family, professional, and commissioner priority concerns and outcomes in paediatric palliative care, which will be used to inform item generation and initial measure development. Through cognitive interviewing initial C-POS versions will be revised. The validation process further aims to test measures for comprehensibility, acceptability, feasibility, reliability, validity, and responsiveness. Lastly, the project aims to move towards implementation of C-POS in paediatric palliative care practice, including development of guidance for C-POS implementation, and adaptation of the existing POS translation protocol to be suitable for the C-POS.

Methods

C-POS uses a mixed-methods approach, including methods such as semi-structured interviews, cognitive interviewing, a Delphi survey, and self-report surveys. C-POS is an ambitious study that, for the first time, will enable the measurement of person-centred outcomes of paediatric palliative care. This will be a turning point in the scientific study of a hitherto neglected group. 

Our steering group is vital in directing our progress and consists of an expert group of researchers, clinicians, medical ethicists and patient and public involvement members. In addition to the two core patient and public members, we have a vital partnership with ‘Generation R’, the Great Ormond Street Young People’s Advisory Group, who have supported us in all phases of C-POS to date.

Impact

The C-POS will be the first fully validated children and family centred outcome measure for use in paediatric palliative care. The study brings together families, researchers, health and social care professionals and champions children’s voices in the research, rather than relying on proxy data. The tool will be implemented into routine clinical practice which if used regularly to measure and document change in patient’s status, can inform and improve care for children and young people with life-limiting and life-threatening illnesses.

Once implemented in the UK, existing online POS translation protocol and implementation guidance will be adapted for wider European implementation of the novel C-POS.

You can watch our C-POS video for health and social care professionals here

You can watch our C-POS video for family members here

Members of the research team recently spoke at the Hospice UK Big Conversations webinar about the project, which you can rewatch here.

Project Team

Myra Bluebond-Langner

Research Project Investigator (Visiting)

Debbie Braybrook

Research Associate

Katherine Bristowe

Herbert Dunhill Senior Lecturer

Clare  Ellis-Smith

Senior Lecturer in Palliative Care

Lorna Fraser

Professor of Palliative Care and Child Health

Effective start/end date: 01/09/2018 - 31/08/2024

Phase 1 – Development

  1. Identify CYP, their families, professional and commissioner priorities for outcomes of care and measure completion methods (qualitative interviews).
  2. A systematic review on optimal recall period, response format and administration mode in CYP measure completion.
  3. Delphi survey to establish priorities for items to be included in C-POS.
  4. Generate initial C-POS version(s)

Phase 2 – Validation

  1. Cognitive interviews to determine the extent to which CYP can participate, and their interpretation and completion of the proposed items.
  2. Refine C-POS and finalise ready for subsequent reliability and validity testing.
  3. Determine test-retest reliability, internal consistency, construct validity and responsiveness.

Phase 3 – Implementation

  1. Develop implementation guidance for routine practice & hold launch workshops for children, families and clinicians
  2. Adapt existing online POS translation protocol and develop implementation guidance for implementation of the novel C-POS.

Work that has informed C-POS: Children’s Palliative care Outcome Scale includes:

  • 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. https://journals.sagepub.com/doi/full/10.1177/0269216316649155
  • 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. https://doi.org/10.12968/ijpn.2019.25.2.72
  • Namisango, E., Bristowe, K., Allsop, M.J. et al. (2019). Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes. Patient;12:15–55. DOI: 10.1007/s40271-018-0333-5
  • Roach, A., Braybrook, D. and Marshall, S. (2021) ‘Reflective insights from developing a palliative care children and young people’s advisory group’, Palliative Medicine. https://doi.org/10.1177/0269216320976035

Publications

  • Coombes, L., K. Bristowe, C. Ellis-Smith,J. Aworinde,L.K. Fraser,J. Downing,M. Bluebond-Langner,L. Chambers,F.E.M. Murtagh,and R. Harding. Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Quality of Life Research. 2021;30:1803–1832. doi:10.1007/s11136-021-02814-4
  • Scott, H.M.,L. Coombes, D. Braybrook,A. Roach,D. Harðardóttir,K. Bristowe,C. Ellis-Smith,I. Higginson,W. Gao,M. Bluebond-Langner,B. Farsides,F.E.M. Murtagh,L.K. Fraser,and R. Harding. COVID-19: Impact on Pediatric Palliative Care. Journal of Pain and Symptom Management. 2022;64(1):e1–e5. doi:10.1016/j.jpainsymman.2022.02.330
  • Coombes, L., D. Braybrook, A. Roach, H. Scott, D. Harðardóttir,K. Bristowe,C. Ellis-Smith,M. Bluebond-Langner,L.K. Fraser,J. Downing,B. Farsides,F.E.M. Murtagh,R. Harding, on behalf of C-POS. Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study. European Journal of Pediatrics. 2022;181:3739–3752. doi:10.1007/s00431-022-04566-w
  • Scott, H.M.,L. Coombes, D. Braybrook, A. Roach,D. Harðardóttir,K. Bristowe,C. Ellis-Smith,J. Downing,F.E.M. Murtagh,B. Farsides,L.K. Fraser,M. Bluebond-Langner,and R. Harding. Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliative Medicine. 2023;37(6):856-865. doi:10.1177/02692163231165101
  • Scott, H.M.,L. Coombes, D. Braybrook, D. Harðardóttir,I. Gaczkowska,and R. Harding. Knowledge, attitudes and beliefs about paediatric palliative care. Annals of Palliative Medicine. 2023;12(1). doi:10.21037/apm-22-1326
  • Coombes, L.,D. Harðardóttir,D. Braybrook, A. Roach,H. Scott,K. Bristowe,C. Ellis-Smith,J. Downing,M. Bluebond-Langner,L.K. Fraser,F.E.M. Murtagh,and R. Harding. Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members. The Patient-Patient-Centered Outcomes Research. 2023;16:473-483. doi:10.1007/s40271-023-00627-w
  • Scott, H.M., D. Braybrook, D. Harðardóttir, C. Ellis-Smith, R. Harding, on behalf of C-POS. Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review. Health and Quality of Life Outcomes. 2023;21(63). doi:10.1186/s12955-023-02143-9
  • Coombes, L., D. Harðardóttir, D. Braybrook, H.M. Scott, K. Bristowe, C. Ellis-Smith,L.K. Fraser,J. Downing,M. Bluebond-Langner,F.E.M. Murtagh,and R. Harding. Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation. Palliative Medicine. 2023;37(10):1509-1519. doi:10.1177/02692163231205126
  • Bristowe K, Braybrook D, Scott HM, Coombes L, Harðardóttir D, Roach A, Ellis-Smith C, Bluebond-Langner M, Fraser LK, Downing J, Murtagh FEM and Harding R. 'My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition. Palliative Medicine.  2024;38(3):379-388. doi:10.1177/02692163241233977
  • Coombes L, Braybrook D, Harðardóttir D, Scott HM, Bristowe K, Ellis-Smith C, Fraser LK, Downing J, Bluebond-Langner M, Murtagh FEM and Harding R. Cognitive testing of the Children’s Palliative Outcome Scale (C-POS) with children, young people and their parents/carers. Palliative Medicine. 2024;38(6):644-659. doi:10.1177/02692163241248735
  • Scott HM, Coombes L, Braybrook D, Harðardóttir D, Roach A, Bristowe K,  Bluebond-Langner M, Fraser LK, Downing J, Farsides B, Murtagh FEM, Ellis-Smith C and Harding R. What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders. Palliative Medicine. 2024;38(4):471-484. doi:10.1177/02692163241234797

The publication feed is not currently available.

Conferences

10th APPM Paediatric Palliative Care Study Day and Research Day. London, November 2019

  • Lucy Coombes, ‘The Children’s Palliative Outcome Scale’

Palliative care Outcome Scale (POS) Workshop, February 2020 ‘Outcome Measurement in Palliative and End of Life Care’. Cicely Saunders Institute, King’s College London

  • Debbie Braybrook, ‘Development of the Children’s Palliative Care Outcome Scale (C-POS): What matters to families facing serious illness?’

11th EAPC World Research Congress Online, October 2020

  • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study - EU research update’
  • Lucy Coombes, ‘Maximising participation in patient-reported outcome measures (PROMs) for children and young people: a systematic review of optimal recall period, response format and administration mode’ (Poster)
  • Lucy Coombes, ‘Priority outcomes for children and young people with life-limiting conditions: An in-depth qualitative interview study’ (Poster)

Palliative care Outcome Scale (POS) Workshop, March 2021

  • Lucy Coombes and Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

ECHO Northern Ireland Paediatric Palliative Care Network, March 2021

  • Lucy Coombes, ‘Patient-Centred Outcomes and the C-POS Study’

Martin House Research Centre 2nd Biennial Research Conference, April 2021

  • Richard Harding, ‘Towards the development of a Children’s Palliative Care Outcome Scale: what are children, young people and parents telling us?’

5th UK National Patient Reported Outcome Measures (PROMs) Research Conference, June 2021

  • Debbie Braybrook ‘"if they knew what I thought was important … that would help a lot more”: Methods for involving children and young people with life-limiting and life-threatening conditions in the development of a paediatric palliative care outcome measure’
  • Lucy Coombes ‘Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review and recommendations for recall period, response scale format, and administration modality’

17th EAPC World Congress Online, October 2021

  • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study - EU research update’
  • Lucy Coombes, ‘Modified Delphi Survey to Ascertain Stakeholder Consensus on Priority Outcomes for Inclusion in the Children’s Palliative Outcome Scale (C-POS)’ (Poster)
  • Hannah Scott, ‘Existential Concerns of Children and Young People with Life-limiting or Life-threatening Conditions’ (Oral)

CoPPAR Network Launch, March 2022

  • Richard Harding, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

12th World Research Congress of the European Association for Palliative Care, May 2022

  • Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study - EU research update’
  • Eve Namisango, ‘Best Practices for Involving Children and Young People in Palliative Care Research’ (plenary)
  • Lucy Coombes, ‘Comprehensibility, Comprehensiveness and Acceptability of a Novel Paediatric Palliative Care Outcome Measure: A Cognitive Interview Study with Children and Families’ (Oral)
  • Hannah Scott, ‘The Impact of COVID-19 on Palliative Care for Children within the UK’ (Oral)
  • Lucy Coombes, ‘Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research’ (Poster)
  • Hannah Scott, ‘Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives’ (Poster)

5th Maruzza International Congress of Paediatric Palliative Care, May 2022

  • Debbie Braybrook, ‘The meaning of ‘normality’ among children and young people with life-limiting or life-threatening conditions’ (Oral)
  • Anna Roach, ‘“We don’t know what’s happening because we’re not there” What matters to siblings of children with serious illness?’ (Oral)

6th UK National Patient Reported Outcome Measures (PROMs) Research Conference, June 2022

  • Daney Harðardóttir ‘Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions’ (oral)

12th Association for Paediatric Palliative Medicine Conference, June 2022

  • Richard Harding and Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

CoPPAR Network: Public and Patient Involvement, June 2022

  • Lucy Coombes and Hannah Scott, ‘Involving children and young people in PPI during the C-POS Study’

World Cancer Congress, June 2022

  • Lucy Coombes, ‘Outcome measurement with children living with advanced cancer’ (plenary)

5th UK Implementation Science Research Conference, July 2022

  • Hannah Scott, ‘Challenges to implementing person-centred outcome measures into routine paediatric palliative care’ (oral)

Yorkshire and Humber Children’s Palliative Care Network Conference, September 2022

  • Hannah Scott and Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

25th International Congress of the Portuguese Association of Palliative Care, September 2022

  • Richard Harding, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

The Together for Short Lives national conference, September 2022

  • Richard Harding and Daney Harðardóttir, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

5th All Island Children’s Palliative Care Conference, November 2022

  • Richard Harding, Daney Harðardóttir, and Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

CoPPAR Network: Research careers in paediatric palliative care, March 2023

  • Lucy Coombes, ‘Research Careers in paediatric palliative care – a nursing perspective’

POS and IPOS Workshops, May 2023

  • Daney Harðardóttir and Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’ (plenary)

Royal College of Paediatrics and Child Health, May 2023

  • Hannah Scott, ‘Implementing child-centred outcome measures into routine practice: A systematic review’ (oral)
  • Debbie Braybrook, ‘What constitutes ‘good quality care’ from the perspectives of children and young people with life-limiting and life-threatening conditions?’ (oral)

18th World Congress of the European Associate for Palliative Care, Rotterdam, June 2023

  • Katherine Bristowe, ‘‘My life is a mess but I cope’: an analysis of the language children with life-limiting and life threatening illnesses use to describe their own condition’ (oral)
  • Lucy Coombes, ‘Development and initial validation of a novel outcome measure for use with children and young people with life-limiting and life-threatening conditions’ (poster)
  • Hannah Scott, ‘Spiritual Concerns of Children with Life-Limiting and Life-Threatening Conditions and Their Families’ (oral)
  • Daney Harðardóttir, ‘Design and administration of patient-centred outcome measures: the perspectives and preferences of children and young people with life-limiting/life-threatening conditions and their family members’ (Poster)

7th UK Patient Reported Outcome Measures (PROMs) Research Conference: 'PROMs Across the Lifespan', June 2023 

  • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’ (plenary)

6th UK and Ireland Implementation Science Research Conference, July 2023 ‘Sustaining health and public services in an uncertain future: what role for implementation science?'

  • Hannah Scott, ‘Developing a Theory of Change for implementing the novel UK Children’s Palliative care Outcome Scale into routine paediatric palliative care’ (poster)

Association for Paediatric Palliative Medicine Conference, November 2023

  • Daney Harðardóttir, ‘Key strategies for recruiting children and young people with life limiting or life threatening conditions and their families to participate in research’ (poster)

SCHN 20th Annual Paediatric Palliative Care Symposium, March 2024

  • Debbie Braybrook, 'Children’s Palliative Care Outcome Scale’ (oral)

18th National Conference on Current Issues in Palliative Care, April 2024

  • Lucy Coombes, ‘Outcome measurement in paediatric palliative care' (oral)

6th All Island Children’s Palliative Care Conference, April 2024

  • Lorna Fraser, ‘Development and Psychometric Evaluation of the Novel Children's Palliative Care Outcome Scale (C-POS)' (oral)

POS and IPOS Workshops, May 2024

  • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’ (oral)
  • Hannah Scott, 'Developing an implementation plan for a novel person-centred outcome measure for children and young people with life-limiting and life-threatening conditions' (oral)

13th World Research Congress of the European Association for Palliative Care, Barcelona, May 2024

  • Debbie Braybrook, 'Key stakeholder perspectives on the role of communication in providing quality paediatric palliative care’ (oral)
  • Lucy Coombes, 'Pain Experiences in Paediatric Palliative Care’ (poster)
  • Hannah Scott, 'Perceived benefits of using Person-Centred Outcome Measures in paediatric palliative care: a qualitative interview study’ (oral)
  • Hannah Scott, 'Implementation of Person-centred Outcome Measures for Children with Life-limiting Conditions’ (poster)

Media coverage

Trials

    News

    Children experiencing end-of-life care have spiritual concerns

    Children in the UK with life-limiting conditions have spiritual needs that should be identified and met to improve palliative care, new research has found.

    Teddy bear in hospital

    Project Team

    Myra Bluebond-Langner

    Research Project Investigator (Visiting)

    Debbie Braybrook

    Research Associate

    Katherine Bristowe

    Herbert Dunhill Senior Lecturer

    Clare  Ellis-Smith

    Senior Lecturer in Palliative Care

    Lorna Fraser

    Professor of Palliative Care and Child Health

    Effective start/end date: 01/09/2018 - 31/08/2024

    Phase 1 – Development

    1. Identify CYP, their families, professional and commissioner priorities for outcomes of care and measure completion methods (qualitative interviews).
    2. A systematic review on optimal recall period, response format and administration mode in CYP measure completion.
    3. Delphi survey to establish priorities for items to be included in C-POS.
    4. Generate initial C-POS version(s)

    Phase 2 – Validation

    1. Cognitive interviews to determine the extent to which CYP can participate, and their interpretation and completion of the proposed items.
    2. Refine C-POS and finalise ready for subsequent reliability and validity testing.
    3. Determine test-retest reliability, internal consistency, construct validity and responsiveness.

    Phase 3 – Implementation

    1. Develop implementation guidance for routine practice & hold launch workshops for children, families and clinicians
    2. Adapt existing online POS translation protocol and develop implementation guidance for implementation of the novel C-POS.

    Work that has informed C-POS: Children’s Palliative care Outcome Scale includes:

    • 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. https://journals.sagepub.com/doi/full/10.1177/0269216316649155
    • 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. https://doi.org/10.12968/ijpn.2019.25.2.72
    • Namisango, E., Bristowe, K., Allsop, M.J. et al. (2019). Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes. Patient;12:15–55. DOI: 10.1007/s40271-018-0333-5
    • Roach, A., Braybrook, D. and Marshall, S. (2021) ‘Reflective insights from developing a palliative care children and young people’s advisory group’, Palliative Medicine. https://doi.org/10.1177/0269216320976035

    Publications

    • Coombes, L., K. Bristowe, C. Ellis-Smith,J. Aworinde,L.K. Fraser,J. Downing,M. Bluebond-Langner,L. Chambers,F.E.M. Murtagh,and R. Harding. Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Quality of Life Research. 2021;30:1803–1832. doi:10.1007/s11136-021-02814-4
    • Scott, H.M.,L. Coombes, D. Braybrook,A. Roach,D. Harðardóttir,K. Bristowe,C. Ellis-Smith,I. Higginson,W. Gao,M. Bluebond-Langner,B. Farsides,F.E.M. Murtagh,L.K. Fraser,and R. Harding. COVID-19: Impact on Pediatric Palliative Care. Journal of Pain and Symptom Management. 2022;64(1):e1–e5. doi:10.1016/j.jpainsymman.2022.02.330
    • Coombes, L., D. Braybrook, A. Roach, H. Scott, D. Harðardóttir,K. Bristowe,C. Ellis-Smith,M. Bluebond-Langner,L.K. Fraser,J. Downing,B. Farsides,F.E.M. Murtagh,R. Harding, on behalf of C-POS. Achieving child-centred care for children and young people with life-limiting and life-threatening conditions—a qualitative interview study. European Journal of Pediatrics. 2022;181:3739–3752. doi:10.1007/s00431-022-04566-w
    • Scott, H.M.,L. Coombes, D. Braybrook, A. Roach,D. Harðardóttir,K. Bristowe,C. Ellis-Smith,J. Downing,F.E.M. Murtagh,B. Farsides,L.K. Fraser,M. Bluebond-Langner,and R. Harding. Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliative Medicine. 2023;37(6):856-865. doi:10.1177/02692163231165101
    • Scott, H.M.,L. Coombes, D. Braybrook, D. Harðardóttir,I. Gaczkowska,and R. Harding. Knowledge, attitudes and beliefs about paediatric palliative care. Annals of Palliative Medicine. 2023;12(1). doi:10.21037/apm-22-1326
    • Coombes, L.,D. Harðardóttir,D. Braybrook, A. Roach,H. Scott,K. Bristowe,C. Ellis-Smith,J. Downing,M. Bluebond-Langner,L.K. Fraser,F.E.M. Murtagh,and R. Harding. Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members. The Patient-Patient-Centered Outcomes Research. 2023;16:473-483. doi:10.1007/s40271-023-00627-w
    • Scott, H.M., D. Braybrook, D. Harðardóttir, C. Ellis-Smith, R. Harding, on behalf of C-POS. Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review. Health and Quality of Life Outcomes. 2023;21(63). doi:10.1186/s12955-023-02143-9
    • Coombes, L., D. Harðardóttir, D. Braybrook, H.M. Scott, K. Bristowe, C. Ellis-Smith,L.K. Fraser,J. Downing,M. Bluebond-Langner,F.E.M. Murtagh,and R. Harding. Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation. Palliative Medicine. 2023;37(10):1509-1519. doi:10.1177/02692163231205126
    • Bristowe K, Braybrook D, Scott HM, Coombes L, Harðardóttir D, Roach A, Ellis-Smith C, Bluebond-Langner M, Fraser LK, Downing J, Murtagh FEM and Harding R. 'My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition. Palliative Medicine.  2024;38(3):379-388. doi:10.1177/02692163241233977
    • Coombes L, Braybrook D, Harðardóttir D, Scott HM, Bristowe K, Ellis-Smith C, Fraser LK, Downing J, Bluebond-Langner M, Murtagh FEM and Harding R. Cognitive testing of the Children’s Palliative Outcome Scale (C-POS) with children, young people and their parents/carers. Palliative Medicine. 2024;38(6):644-659. doi:10.1177/02692163241248735
    • Scott HM, Coombes L, Braybrook D, Harðardóttir D, Roach A, Bristowe K,  Bluebond-Langner M, Fraser LK, Downing J, Farsides B, Murtagh FEM, Ellis-Smith C and Harding R. What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders. Palliative Medicine. 2024;38(4):471-484. doi:10.1177/02692163241234797

    The publication feed is not currently available.

    Conferences

    10th APPM Paediatric Palliative Care Study Day and Research Day. London, November 2019

    • Lucy Coombes, ‘The Children’s Palliative Outcome Scale’

    Palliative care Outcome Scale (POS) Workshop, February 2020 ‘Outcome Measurement in Palliative and End of Life Care’. Cicely Saunders Institute, King’s College London

    • Debbie Braybrook, ‘Development of the Children’s Palliative Care Outcome Scale (C-POS): What matters to families facing serious illness?’

    11th EAPC World Research Congress Online, October 2020

    • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study - EU research update’
    • Lucy Coombes, ‘Maximising participation in patient-reported outcome measures (PROMs) for children and young people: a systematic review of optimal recall period, response format and administration mode’ (Poster)
    • Lucy Coombes, ‘Priority outcomes for children and young people with life-limiting conditions: An in-depth qualitative interview study’ (Poster)

    Palliative care Outcome Scale (POS) Workshop, March 2021

    • Lucy Coombes and Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    ECHO Northern Ireland Paediatric Palliative Care Network, March 2021

    • Lucy Coombes, ‘Patient-Centred Outcomes and the C-POS Study’

    Martin House Research Centre 2nd Biennial Research Conference, April 2021

    • Richard Harding, ‘Towards the development of a Children’s Palliative Care Outcome Scale: what are children, young people and parents telling us?’

    5th UK National Patient Reported Outcome Measures (PROMs) Research Conference, June 2021

    • Debbie Braybrook ‘"if they knew what I thought was important … that would help a lot more”: Methods for involving children and young people with life-limiting and life-threatening conditions in the development of a paediatric palliative care outcome measure’
    • Lucy Coombes ‘Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review and recommendations for recall period, response scale format, and administration modality’

    17th EAPC World Congress Online, October 2021

    • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study - EU research update’
    • Lucy Coombes, ‘Modified Delphi Survey to Ascertain Stakeholder Consensus on Priority Outcomes for Inclusion in the Children’s Palliative Outcome Scale (C-POS)’ (Poster)
    • Hannah Scott, ‘Existential Concerns of Children and Young People with Life-limiting or Life-threatening Conditions’ (Oral)

    CoPPAR Network Launch, March 2022

    • Richard Harding, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    12th World Research Congress of the European Association for Palliative Care, May 2022

    • Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study - EU research update’
    • Eve Namisango, ‘Best Practices for Involving Children and Young People in Palliative Care Research’ (plenary)
    • Lucy Coombes, ‘Comprehensibility, Comprehensiveness and Acceptability of a Novel Paediatric Palliative Care Outcome Measure: A Cognitive Interview Study with Children and Families’ (Oral)
    • Hannah Scott, ‘The Impact of COVID-19 on Palliative Care for Children within the UK’ (Oral)
    • Lucy Coombes, ‘Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research’ (Poster)
    • Hannah Scott, ‘Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives’ (Poster)

    5th Maruzza International Congress of Paediatric Palliative Care, May 2022

    • Debbie Braybrook, ‘The meaning of ‘normality’ among children and young people with life-limiting or life-threatening conditions’ (Oral)
    • Anna Roach, ‘“We don’t know what’s happening because we’re not there” What matters to siblings of children with serious illness?’ (Oral)

    6th UK National Patient Reported Outcome Measures (PROMs) Research Conference, June 2022

    • Daney Harðardóttir ‘Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions’ (oral)

    12th Association for Paediatric Palliative Medicine Conference, June 2022

    • Richard Harding and Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    CoPPAR Network: Public and Patient Involvement, June 2022

    • Lucy Coombes and Hannah Scott, ‘Involving children and young people in PPI during the C-POS Study’

    World Cancer Congress, June 2022

    • Lucy Coombes, ‘Outcome measurement with children living with advanced cancer’ (plenary)

    5th UK Implementation Science Research Conference, July 2022

    • Hannah Scott, ‘Challenges to implementing person-centred outcome measures into routine paediatric palliative care’ (oral)

    Yorkshire and Humber Children’s Palliative Care Network Conference, September 2022

    • Hannah Scott and Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    25th International Congress of the Portuguese Association of Palliative Care, September 2022

    • Richard Harding, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    The Together for Short Lives national conference, September 2022

    • Richard Harding and Daney Harðardóttir, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    5th All Island Children’s Palliative Care Conference, November 2022

    • Richard Harding, Daney Harðardóttir, and Debbie Braybrook, ‘The Children’s Palliative Outcome Scale (C-POS) Study’

    CoPPAR Network: Research careers in paediatric palliative care, March 2023

    • Lucy Coombes, ‘Research Careers in paediatric palliative care – a nursing perspective’

    POS and IPOS Workshops, May 2023

    • Daney Harðardóttir and Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’ (plenary)

    Royal College of Paediatrics and Child Health, May 2023

    • Hannah Scott, ‘Implementing child-centred outcome measures into routine practice: A systematic review’ (oral)
    • Debbie Braybrook, ‘What constitutes ‘good quality care’ from the perspectives of children and young people with life-limiting and life-threatening conditions?’ (oral)

    18th World Congress of the European Associate for Palliative Care, Rotterdam, June 2023

    • Katherine Bristowe, ‘‘My life is a mess but I cope’: an analysis of the language children with life-limiting and life threatening illnesses use to describe their own condition’ (oral)
    • Lucy Coombes, ‘Development and initial validation of a novel outcome measure for use with children and young people with life-limiting and life-threatening conditions’ (poster)
    • Hannah Scott, ‘Spiritual Concerns of Children with Life-Limiting and Life-Threatening Conditions and Their Families’ (oral)
    • Daney Harðardóttir, ‘Design and administration of patient-centred outcome measures: the perspectives and preferences of children and young people with life-limiting/life-threatening conditions and their family members’ (Poster)

    7th UK Patient Reported Outcome Measures (PROMs) Research Conference: 'PROMs Across the Lifespan', June 2023 

    • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’ (plenary)

    6th UK and Ireland Implementation Science Research Conference, July 2023 ‘Sustaining health and public services in an uncertain future: what role for implementation science?'

    • Hannah Scott, ‘Developing a Theory of Change for implementing the novel UK Children’s Palliative care Outcome Scale into routine paediatric palliative care’ (poster)

    Association for Paediatric Palliative Medicine Conference, November 2023

    • Daney Harðardóttir, ‘Key strategies for recruiting children and young people with life limiting or life threatening conditions and their families to participate in research’ (poster)

    SCHN 20th Annual Paediatric Palliative Care Symposium, March 2024

    • Debbie Braybrook, 'Children’s Palliative Care Outcome Scale’ (oral)

    18th National Conference on Current Issues in Palliative Care, April 2024

    • Lucy Coombes, ‘Outcome measurement in paediatric palliative care' (oral)

    6th All Island Children’s Palliative Care Conference, April 2024

    • Lorna Fraser, ‘Development and Psychometric Evaluation of the Novel Children's Palliative Care Outcome Scale (C-POS)' (oral)

    POS and IPOS Workshops, May 2024

    • Lucy Coombes, ‘The Children’s Palliative Outcome Scale (C-POS) Study’ (oral)
    • Hannah Scott, 'Developing an implementation plan for a novel person-centred outcome measure for children and young people with life-limiting and life-threatening conditions' (oral)

    13th World Research Congress of the European Association for Palliative Care, Barcelona, May 2024

    • Debbie Braybrook, 'Key stakeholder perspectives on the role of communication in providing quality paediatric palliative care’ (oral)
    • Lucy Coombes, 'Pain Experiences in Paediatric Palliative Care’ (poster)
    • Hannah Scott, 'Perceived benefits of using Person-Centred Outcome Measures in paediatric palliative care: a qualitative interview study’ (oral)
    • Hannah Scott, 'Implementation of Person-centred Outcome Measures for Children with Life-limiting Conditions’ (poster)

    Media coverage

    Trials

      News

      Children experiencing end-of-life care have spiritual concerns

      Children in the UK with life-limiting conditions have spiritual needs that should be identified and met to improve palliative care, new research has found.

      Teddy bear in hospital

      Our Partners

      Wolfson Palliative Care Research Centre

      The Martin House Research Centre

      Great ormond street YPAG

      Great Ormond Street Young Persons' Advisory Group

      ICPCN-logo (1)

      International Children's Palliative Care Network

      University Lancaster logo

      Lancaster University

      Project status: Ongoing
      cposuk logo

      Principal Investigator

      Funding

      Funding Body: European Research Council

      Amount: £1,547,845

      Period: September 2018 - August 2024

      Keywords

      ADOLESCENTCHILDMINORSPALLIATIVE CAREPATIENT-CENTRED OUTCOMES RESEARCHPATIENT OUTCOME ASSESSMENTPATIENT REPORTED OUTCOME MEASURESPSYCHOMETRICSWEIGHTS AND MEASURES