Article

AIMS: To develop a Disabilities Terminology Set and quantify the multifaceted
needs of disabled children and their families in a district disability clinic
population. METHOD: Data from structured electronic clinic letters of children
attending paediatric disability clinics from June 2007 to May 2012 in Sunderland,
north-east England collected at the point of clinical care were analysed to
determine appropriate terms for consistent recording of each need and issue.
Terms were collated to count the number of needs per child. RESULTS: A Systemized
Nomenclature of Medicine - Clinical Terms subset of 296 terms was identified and
published, and 8392 consultations for 1999 children were reviewed. The required
number of clinic appointments correlated strongly with the number of needs
identified. Children with intellectual disabilities in addition to cerebral palsy
and epilepsy had more than double the number of conditions, technology
dependencies, and family-reported issues than those without. Disabled children
who subsequently died had the highest burden of needs (p=0.007). INTERPRETATION:
Detailed data about needs generated outputs useful for local care pathway
development and service planning. Sufficient evidence was provided for successful
business cases leading to the appointment of additional paediatric disability
consultants. Counting numbers of needs and issues quantifies complexity in a
straightforward way. This could underpin needs-based commissioning of services.
CI - (c) 2016 Mac Keith Press.

Langue : ANGLAIS