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 and Logan, Stuart (2015) Meaningful health outcomes for paediatric neurodisability: stakeholder prioritisation and appropriateness of patient reported outcome measures. Health and Quality of Life Outcomes, 13. p. 87. ISSN 1477-7525

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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.

Item Type: Article
Keywords: Adolescent Biomedical Research/organization & administration Child Disabled Children/*rehabilitation/statistics & numerical data Female Health Personnel *Health Status Indicators Humans Infant Male Neurodevelopmental Disorders/*classification/epidemiology/*therapy Parent-Child Relations Patient Outcome Assessment Pediatrics/organization & administration Qualitative Research *Quality of Life
Schools and Departments: Brighton and Sussex Medical School > Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Research Centres and Groups: Sussex Health Outcomes Research and Education in Cancer
Subjects: R Medicine > RJ Pediatrics
R Medicine > RJ Pediatrics > RJ0101 Child health. Child health services
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Depositing User: Valerie Shilling
Date Deposited: 27 Sep 2016 11:13
Last Modified: 08 Mar 2017 01:06
URI: http://sro.sussex.ac.uk/id/eprint/62344

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