Morris 2015 Health and Quality of Life Outcomes.pdf (962.34 kB)
Meaningful health outcomes for paediatric neurodisability: stakeholder prioritisation and appropriateness of patient reported outcome measures
journal contribution
posted on 2023-06-09, 02:29 authored by Christopher Morris, Astrid Janssens, Valerie ShillingValerie Shilling, Amanda Allard, Andrew Fellowes, Richard Tomlinson, Jane Williams, Jo Thompson Coon, Morwenna Rogers, Bryony Beresford, Colin Green, Crispin Jenkinson, Alan Tennant, Stuart LoganBACKGROUND: Health services are increasingly focused on measuring and monitoring outcomes, particularly those that reflect patients' priorities. To be meaningful, outcomes measured should be valued by patients and carers, be consistent with what health professionals seek to achieve, and be robust in terms of measurement properties. The aim of this study was (i) to seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children with neurodisability, and (ii) to appraise which multidimensional patient reported outcome measures (PROMs) could be used to assess salient health domains. METHODS: Relevant outcomes were identified from (i) qualitative research with children and young people with neurodisability and parent carers, (ii) Delphi survey with health professionals, and (iii) systematic review of PROMs. The International Classification of Functioning Disability and Health provided a common language to code aspects of health. A subset of stakeholders participated in a prioritisation meeting incorporating a Q-sorting task to discuss and rank aspects of health. RESULTS: A total of 33 pertinent aspects of health were identified. Fifteen stakeholders from the qualitative and Delphi studies participated in the prioritisation meeting: 3 young people, 5 parent carers, and 7 health professionals. Aspects of health that emerged as more important for families and targets for health professionals were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, community and social life, behaviour, toileting and safety. Whilst available PROMs measure many aspects of health in the ICF, no single PROM captures all the key domains prioritised as for children and young people with neurodisability. The paucity of scales for assessing communication was notable. CONCLUSIONS: We propose a core suite of key outcome domains for children with neurodisability that could be used in evaluative research, audit and as health service performance indicators. Future work could appraise domain-specific PROMs for these aspects of health; a single measure assessing the key aspects of health that could be applied across paediatric neurodisability remains to be developed.
History
Publication status
- Published
File Version
- Published version
Journal
Health and Quality of Life OutcomesISSN
1477-7525Publisher
BioMed CentralExternal DOI
Volume
13Page range
87Department affiliated with
- Sussex Health Outcomes Research & Education in Cancer (SHORE-C) Publications
Research groups affiliated with
- Sussex Health Outcomes Research and Education in Cancer Publications
Full text available
- Yes
Peer reviewed?
- Yes
Legacy Posted Date
2016-09-27First Open Access (FOA) Date
2016-09-27First Compliant Deposit (FCD) Date
2016-09-27Usage metrics
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No categories selectedKeywords
AdolescentBiomedical Research/organization & administrationChildDisabled Children/*rehabilitation/statistics & numerical dataFemaleHealth Personnel*Health Status IndicatorsHumansInfantMaleNeurodevelopmental Disorders/*classification/epidemiology/*therapyParent-Child RelationsPatient Outcome AssessmentPediatrics/organization & administrationQualitative Research*Quality of Life
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