Astrid Janssens1, Jane Williams2, Richard Tomlinson3, Stuart Logan1, Christopher Morris1. 1. Peninsula Cerebra Research Unit (PenCRU) & NIHR PenCLAHRC, University of Exeter Medical School, Exeter, UK. 2. Nottingham University Hospitals NHS Trust, Nottingham, UK. 3. Royal Devon & Exeter NHS Foundation Trust, Exeter, 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. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
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. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Entities:
Keywords:
Health services research; Neurodisability; Outcomes research
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