Published literature
A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatmentsFrance E, Uny I, Turley R, Thomson K, Noyes J, Jordan A, Forbat L, Caes L, Silveira Bianchim M · Cochrane Database of Systematic Reviews · 2023
A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation studyNamisango E, Murtagh F, Bristowe K, Downing J, Powell R, Atieno M, Sandham M, Ali Z, Meiring M, Mwangi-Powell F, Abbas M, Fraser L, Higginson I, Harding R · Health & Quality of Life Outcomes · 2025
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner PerspectivesScott H, Coombes L, Braybrook D, Roach A, Harardottir D, Bristowe K, Ellis-Smith C, Chambers L, Bluebond-Langner M, Farsides B, Murtagh F, Harding R · Palliative Medicine · 2022
Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carersCoombes L, Braybrook D, Hardardottir D, Scott H, Bristowe K, Ellis-Smith C, Fraser L, Downing J, Bluebond-Langner M, Murtagh F, Harding R · Palliative Medicine · 2024
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 MembersCoombes L, Harðardóttir D, Braybrook D, Roach A, Scott H, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Patient · 2023
Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK)Braybrook D, Coombes L, Harardottir D, Scott H, Bristowe K, Ellis-Smith C, Roach A, Ramsenthaler C, Bluebond-Langner M, Downing J, Murtagh F, Fraser L, Harding R · Palliative care and social practice · 2024
Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot StudyFriedel M, Brichard B, Boonen S, Tonon C, De Terwangne B, Bellis D, Mevisse M, Fonteyne C, Jaspard M, Schruse M, Harding R, Downing J, Namisango E, Degryse J, Aujoulat I · Journal of palliative medicine. · 2020
Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countriesNamisango E, Bristowe K, Murtagh F, Downing J, Powell R, Atieno M, Abas M, Ali Z, Luyirika E, Meiring M, Mwangi-Powell F, Higginson I, Harding R · Palliative Medicine · 2022
Feasibility of Implementing an Electronic Patient-Reported Outcome-Based Digital Health Platform in Pediatric Oncology and Palliative Care: Insights From the MyPal4Kids Multicenter Observational StudyMeyerheim M, Radova L, Burns-Gebhart A, Mergen M, Natsiavas P, Bonotis P, Karamanidou C, Payne S, Downing J, Ling J, Sander A, Mirzaie K, Dokutur S, Vaculikova J, Lokaj P, Rohleder O, Graf N · JMIR Cancer · 2026
How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature ReviewMayland C, Sunderland K, Taylor P, Powell P, Turner N, Cox V, Gillman C, Cooper M, Zeigler L, Flemming K, Fraser L · Palliative Medicine · 2022
''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 development of a paediatric palliative care outcome measureBraybrook D, Coombes L, Roach A, Scott H, Haroardottir D, Bristowe K, Ellis-Smith C, Hills M, Maynard L, Anderson A, Namisango E, Higginson I, Downing J, Bluebond-Langner M, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2022
Integrating Electronic Patient-Reported Outcomes and Palliative Care in Pediatric Advanced Cancer: The PediQUEST Response Multisite Randomized Controlled TrialDussel V, Orellana L, Requena M, Avery M, Becker D, Ullrich C, Feudtner C, Freedman J, Kang T, Waldman E, Gerhardt C, Bakitas M, Baker J, Friedrichsdorf S, Rosenberg A, Wolfe J · Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2026
Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available toolsMayland C, Sunderland K, Cooper M, Taylor P, Powell P, Zeigler L, Cox V, Gilman C, Turner N, Flemming K, Fraser L · Palliat Med · 2022
MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patientsMeyerheim M, Karamanidou C, Payne S, Garani-Papadatos T, Sander A, Downing J, Stamatopoulos K, Ling J, Payne C, Scarfò L, Lokaj P, Maramis C, Graf N · BMJ Open · 2021
Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: A systematic reviewGallagher K, Chant K, Parisi V, Patel M, Dunbar H, Paize F, Bertaud S, Agyepong A, Mancini A, Bluebond-Langner M, Marlow N · Archives of Disease in Childhood: Fetal and Neonatal Edition · 2025
Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditionsHaroardottir D, Coombes L, Braybrook D, Scott H, Roach A, Bristowe K, Ellis-Smith C, Downing J, Bluebond-Langner M, Laddie J, Hills M, Ramsenthaler C, Fraser L, Murtagh F, Harding R · Quality of Life Research · 2023
Pediatric Palliative Symptom Categories for (e)PROM in specialized pediatric palliative home careHocher R, Ruthke N, Busse T, Ghori S, Krumpelmann S, Messerschmidt C, Nathrath M, Vaillant V, Voelker T, Voelzke A, Zimmermann J, Deckers M · Journal of pain and symptom management · 2026
Quality Measures for End-of-Life in Children with Heart Disease: A Modified Delphi ApproachJohnston E, Tefera R, Nyamao T, Martinez I, Bhayani S, Mendoza E, Ananth P, Whittle S, Sadler E, James K, Moynihan K, Bhatia S, Asch S · Journal of Pain and Symptom Management · 2026
Subcutaneous Drug Administration in Pediatric Palliative Home Care: A Multicenter Prospective StudyRiva de la Hoz B, de Miguel M, Gorbe C, Tristancho-Perez A, Garcia-Palop B, Corro B, Nogue-Pujadas E, Bosch-Peligero M, Zurbano R, Yunquera-Romero L, Garcia-Lopez I · Journal of Pain & Symptom Management · 2026
The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncologyWithycombe J, McFatrich M, Pinheiro L, Hinds P, Keller F, Baker J, Mack J, Sung L, Waldron M, Reeve B · Quality of Life Research · 2019
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 studyNamisango E, Bristowe K, Murtagh F, Downing J, Powell R, Abas M, Lohfeld L, Ali Z, Atieno M, Haufiku D, Guma S, Luyirika E, Mwangi-Powell F, Higginson I, Harding R · Palliative Medicine · 2020
Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures as Clinical Trial Endpoints: Experience from a Multicenter Pragmatic Trial in Children with Crohn’s DiseaseMiller T, Schuchard J, Carle A, Forrest C, Kappelman M, Adler J, Ammoury R, Bass D, Bass J, Benkov K, Bousvaros A, Boyle B, Cabrera J, Colletti R, Dorsey J, Ebach D, Firestine A, Gulati A, Hoffenberg E, Jester T, Kaplan J, Kugathasan S, Kusek M, Leibowitz I, Linville T, Margolis P, Minar P, Rios Z, Moses J, Palomo P, Pappa H, Pashankar D, Saeed S, Samson C, Sandberg K, Steiner S, Strople J, Sullivan J, Tung J, Wali P · The Journal of Pediatrics · 2021
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 stakeholdersScott H, Coombes L, Braybrook D, Hardardottir D, Roach A, Bristowe K, Bluebond-Langner M, Fraser L, Downing J, Farsides B, Murtagh F, Ellis-Smith C, Harding R · Palliative Medicine · 2024
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