Journal
ARCHIVES OF DISEASE IN CHILDHOOD
Volume 99, Issue 10, Pages 927-932Publisher
BMJ PUBLISHING GROUP
DOI: 10.1136/archdischild-2013-305803
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Funding
- National Institute for Health Research (NIHR) Health Services and Delivery Research programme [10/2002/16]
- NIHR Collaboration for Leadership in Applied Health Research and Care of the South West Peninsula (PenCLAHRC)
- charity Cerebra
- National Institute for Health Research [10/2002/16] Funding Source: researchfish
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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.
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