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  • Oral presentation
  • Open Access

Towards a shared vision for measureable and meaningful health outcomes for children and young people with neurodisability: qualitative research, Delphi survey, systematic review, and stakeholder prioritisation

  • Christopher Morris1Email author,
  • Astrid Janssens1,
  • Amanda Allard2,
  • Joanne Thompson Coon1,
  • Valerie Shilling1,
  • Richard Tomlinson3,
  • Jane Williams4,
  • Andrew Fellowes2,
  • Morwenna Rogers1,
  • Karen Allen1,
  • Bryony Beresford5,
  • Colin Green1,
  • Crispin Jenkinson6,
  • Alan Tennant7 and
  • Stuart Logan1
Trials201516(Suppl 1):O4

https://doi.org/10.1186/1745-6215-16-S1-O4

Published: 29 May 2015

Keywords

Young PeopleService UserMeasurement PropertyStakeholder GroupParent Carer

Objective

To seek a shared vision between families and clinicians regarding key aspects of health as outcomes, beyond mortality and morbidity, for children and young people with neurodisability. To appraise the appropriateness and measurement properties of multidimensional patient reported outcome measures (PROMs) to assess the outcome 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 stakeholder group participated in a prioritisation Q-sort task. Participants 54 children and young people with neurodisability and 53 parent carers participated in either focus groups or interviews; 262 multidisciplinary health professionals took part in one or more rounds of a Delphi survey. 15 stakeholders participated in a consensus meeting: 3 young people, 5 parent carers, and 7 multidisciplinary health professionals.

Results

The qualitative study and Delphi survey suggested a range of aspects of health that are important to service users and targeted by health professionals. There was partial but not complete overlap. Key outcome areas prioritised were: communication, emotional wellbeing, pain, sleep, mobility, self-care, independence, mental health, social activities; behaviour, toileting, and safety were also important to many parents. No single multidimensional PROM was identified that captured all the key aspects of health. Evidence was lacking of one or more measurement properties for all candidate PROMs in children and young people with neurodisability, and especially for preference-based measures.

Conclusions

This research proposes a core suite of outcome domains for children and young people with neurodisability that can be used to assess health services routinely and in trials. Further work is required to produce a single PROM to measure these outcomes efficiently across neurodisability.

Declarations

Acknowledgements

This study was part of research funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (Project 10/2002/16). The views and opinions expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

Authors’ Affiliations

(1)
University of Exeter Medical School, University of Exeter, Exeter, UK
(2)
Council for Disabled Children, National Children’s Bureau, London, UK
(3)
Royal Devon and Exeter NHS Foundation Trust, Exeter, UK
(4)
Nottingham University Hospitals NHS Trust, Nottingham, UK
(5)
Social Policy Research Unit, University of York, York, UK
(6)
Nuffield Department of Population Health, University of Oxford, Oxford, UK
(7)
Department of Rehabilitation Medicine, University of Leeds, Leeds, UK

Copyright

© Morris et al; licensee BioMed Central Ltd. 2015

This article is published under license to BioMed Central Ltd. 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 cited. 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.

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