Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures

2.50
Hdl Handle:
http://hdl.handle.net/11287/594014
Title:
Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
Authors:
Morris, Christopher; Janssens, A.; Shilling, V.; Allard, A.; Fellowes, A.; Tomlinson, Richard; Williams, J.; Thompson Coon, J.; Rogers, M.; Beresford, B.; Green, C.; Jenkinson, C.; Tennant, A.; Logan, Stuart
Abstract:
BACKGROUND: 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.
Citation:
Health Qual Life Outcomes. 2015 Jun 25;13:87.
Publisher:
BioMed Central
Journal:
Health and quality of life outcomes
Issue Date:
25-Jun-2015
URI:
http://hdl.handle.net/11287/594014
DOI:
10.1186/s12955-015-0284-7
PubMed ID:
26108625
Additional Links:
http://hqlo.biomedcentral.com/articles/10.1186/s12955-015-0284-7
Note:
This article is available via Open Access. Please click on the 'Additional Link' above to access the full-text.
Type:
Journal Article; Research Support, Non-U.S. Gov't
Language:
eng
ISSN:
1477-7525
Appears in Collections:
2015 RD&E publications; Paediatrics; Honorary contracts publications

Full metadata record

DC FieldValue Language
dc.contributor.authorMorris, Christopheren
dc.contributor.authorJanssens, A.en
dc.contributor.authorShilling, V.en
dc.contributor.authorAllard, A.en
dc.contributor.authorFellowes, A.en
dc.contributor.authorTomlinson, Richarden
dc.contributor.authorWilliams, J.en
dc.contributor.authorThompson Coon, J.en
dc.contributor.authorRogers, M.en
dc.contributor.authorBeresford, B.en
dc.contributor.authorGreen, C.en
dc.contributor.authorJenkinson, C.en
dc.contributor.authorTennant, A.en
dc.contributor.authorLogan, Stuarten
dc.date.accessioned2016-01-19T12:38:36Zen
dc.date.available2016-01-19T12:38:36Zen
dc.date.issued2015-06-25en
dc.identifier.citationHealth Qual Life Outcomes. 2015 Jun 25;13:87.en
dc.identifier.issn1477-7525en
dc.identifier.pmid26108625en
dc.identifier.doi10.1186/s12955-015-0284-7en
dc.identifier.urihttp://hdl.handle.net/11287/594014en
dc.description.abstractBACKGROUND: 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.en
dc.language.isoengen
dc.publisherBioMed Centralen
dc.relation.urlhttp://hqlo.biomedcentral.com/articles/10.1186/s12955-015-0284-7en
dc.titleMeaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measuresen
dc.typeJournal Articleen
dc.typeResearch Support, Non-U.S. Gov'ten
dc.identifier.journalHealth and quality of life outcomesen
dc.description.noteThis article is available via Open Access. Please click on the 'Additional Link' above to access the full-text.en

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