Health outcomes for children with neurodisability: what do professionals regard as primary targets?

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.

Contributors

Janssens, A. Williams, J. Tomlinson, R. Logan, S. Morris, C.

Publication

Journal: Arch Dis Child
Volume: 0
Issue:
Pages: 1 - 6
Year: 2014
DOI: 10.1136/archdischild-2013-305803

Further Study Information

Current Stage: Not Applicable
Date:
Funding source(s): This study was part of research funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme (Project 10/2002/16); the work also benefited from support from NIHR Collaboration for Leadership in Applied Health Research and Care of the South West Peninsula (PenCLAHRC), and the charity Cerebra. The views and opinions expressed in this paper are those of the authors and not necessarily those of the NHS, the NIHR, the Department of Health, or Cerebra.


Health Area

Disease Category: Child health, Developmental, psychosocial, & learning problems, Neurology

Disease Name: Neurodisability

Target Population

Age Range: 0 - 18

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Clinical experts

Study Type

- Recommendations made

Method(s)

- Delphi process