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
نویسندگان
چکیده
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 Morris, Astrid Janssens, Amanda Allard, Joanne Thompson Coon, Valerie Shilling, Richard Tomlinson, Jane Williams, Andrew Fellowes, Morwenna Rogers, Karen Allen, Bryony Beresford, Colin Green, Crispin Jenkinson, Alan Tennant, Stuart Logan
منابع مشابه
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 terms of measurement properties. The aim of this study was (i) to seek a shared vision between fa...
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OBJECTIVES To identify key health outcomes, beyond morbidity and mortality, regarded as important in children and young people with neurodisability, and their parents. DESIGN Qualitative research incorporating a thematic analysis of the data supported by the Framework Approach; the International Classification of Functioning, Disability and Health (ICF) provided a theoretical foundation. SE...
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AIM The aim of this study was to develop, systematically, a consensus-based definition for 'neurodisability' that is meaningful to health professionals and parents of children with neurological conditions. METHOD A multidisciplinary group of health professionals was recruited through child development teams and professional societies in the UK; several parents of children with neurological co...
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OBJECTIVES To engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability. DESIGN British Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinici...
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