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

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...

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Autores principales: Morris, Christopher, Janssens, Astrid, Shilling, Valerie, Allard, Amanda, Fellowes, Andrew, Tomlinson, Richard, Williams, Jane, Thompson Coon, Jo, Rogers, Morwenna, Beresford, Bryony, Green, Colin, Jenkinson, Crispin, Tennant, Alan, Logan, Stuart
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4478638/
https://www.ncbi.nlm.nih.gov/pubmed/26108625
http://dx.doi.org/10.1186/s12955-015-0284-7
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author Morris, Christopher
Janssens, Astrid
Shilling, Valerie
Allard, Amanda
Fellowes, Andrew
Tomlinson, Richard
Williams, Jane
Thompson Coon, Jo
Rogers, Morwenna
Beresford, Bryony
Green, Colin
Jenkinson, Crispin
Tennant, Alan
Logan, Stuart
author_facet Morris, Christopher
Janssens, Astrid
Shilling, Valerie
Allard, Amanda
Fellowes, Andrew
Tomlinson, Richard
Williams, Jane
Thompson Coon, Jo
Rogers, Morwenna
Beresford, Bryony
Green, Colin
Jenkinson, Crispin
Tennant, Alan
Logan, Stuart
author_sort Morris, Christopher
collection PubMed
description 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.
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spelling pubmed-44786382015-06-25 Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures Morris, Christopher Janssens, Astrid Shilling, Valerie Allard, Amanda Fellowes, Andrew Tomlinson, Richard Williams, Jane Thompson Coon, Jo Rogers, Morwenna Beresford, Bryony Green, Colin Jenkinson, Crispin Tennant, Alan Logan, Stuart Health Qual Life Outcomes Research Article 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. BioMed Central 2015-06-25 /pmc/articles/PMC4478638/ /pubmed/26108625 http://dx.doi.org/10.1186/s12955-015-0284-7 Text en © Morris et al. 2015 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Morris, Christopher
Janssens, Astrid
Shilling, Valerie
Allard, Amanda
Fellowes, Andrew
Tomlinson, Richard
Williams, Jane
Thompson Coon, Jo
Rogers, Morwenna
Beresford, Bryony
Green, Colin
Jenkinson, Crispin
Tennant, Alan
Logan, Stuart
Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
title Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
title_full Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
title_fullStr Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
title_full_unstemmed Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
title_short Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures
title_sort meaningful health outcomes for paediatric neurodisability: stakeholder prioritisation and appropriateness of patient reported outcome measures
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4478638/
https://www.ncbi.nlm.nih.gov/pubmed/26108625
http://dx.doi.org/10.1186/s12955-015-0284-7
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