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

Health and Quality of Life Outcomes

Stuart Logan²  Alan Tennant³  Crispin Jenkinson¹  Colin Green²  Bryony Beresford⁷  Morwenna Rogers²  Jo Thompson Coon²  Jane Williams⁶  Richard Tomlinson⁴  Andrew Fellowes⁵  Amanda Allard⁵  Valerie Shilling²  Astrid Janssens²  Christopher Morris² 

[1] Nuffield Department of Population Health, University of, Oxford, UK;PenCLAHRC, University of Exeter Medical School, University of Exeter, South Cloisters, St Luke’s Campus, Exeter EX1 2LU, UK;Department of Rehabilitation Medicine, University of Leeds, Leeds, UK;Department of Child Health, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK;Council for Disabled Children, National Children’s Bureau, London, UK;Department of Child Health and Paediatrics, Nottingham University Hospitals NHS Trust, Nottingham, UK;Social Policy Research Unit, University of York, York, UK

关键词: Core outcome set;    Prioritisation;    Patient reported outcome;    Neurodisability;    Children;   

Others  :  1218517
DOI  :  10.1186/s12955-015-0284-7

 received in 2015-04-16, accepted in 2015-06-11,  发布年份 2015

【 摘 要 】

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.

【 授权许可】

   
2015 Morris et al.

【 图 表 】

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