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Health outcomes for children with neurodisability: what do professionals regard as primary targets?
  1. Astrid Janssens1,
  2. Jane Williams2,
  3. Richard Tomlinson3,
  4. Stuart Logan1,
  5. Christopher Morris1
  1. 1Peninsula Cerebra Research Unit (PenCRU) & NIHR PenCLAHRC, University of Exeter Medical School, Exeter, UK
  2. 2Nottingham University Hospitals NHS Trust, Nottingham, UK
  3. 3Royal Devon & Exeter NHS Foundation Trust, Exeter, UK
  1. Correspondence to Dr Christopher Morris, PenCRU, Child Health Group, University of Exeter Medical School, Veysey Building, Salmon Pool Lane, EX2 4SG, Exeter, UK; christopher.morris{at}exeter.ac.uk

Abstract

Aim To identify what aspects of health clinicians target when working with children with neurodisability, and which might be appropriate to assess the performance of health services.

Method Health professionals were recruited through child development teams and professional societies in England. Professionals participated in four rounds of an online Delphi survey. Open questions were used to elicit aspects of health; these were coded using the WHO International Classification of Functioning, Disability and Health for Children and Youth. Then, participants were asked to rate their agreement with statements to prioritise outcomes identified.

Results Responses to all four rounds were, respectively: 233/276 (84.4%), 232/286 (81.1%), 227/285 (79.6%) and 191/284 (67.3%). The key outcome domains identified were: mental health, confidence/emotional stability, anxiety/attention, sleep, pain, toileting, movement ability, manual ability, acquiring skills, communication, mobility, self-care, recreation and leisure. Participants rated both functioning and well-being in these aspects of health as equally important.

Interpretation This Delphi survey identified nine key domains that provide a professional perspective on a core set of outcomes for evaluating services for children and young people with neurodisability.

  • Health services research
  • Outcomes research
  • Neurodisability

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