Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and Disabilities Complexity Scale

Abstract

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.

Do children with neurological disabilities use more inpatient resources: an observational study

“…ND was split into 6 categories [11]: (1) intellectual and developmental disorders; (2) autism spectrum disorder; (3) cerebral palsy; (4) epilepsy; (5) genetic, chromosomal and syndromic conditions; and (6) more than one ND. Children with clinical codes that fell into only one of the first 5 categories were assigned “children with one ND”.…”

The Health, Functioning and Wellbeing Summary Traffic Light Communication Tool: a survey of families’ views

“…The list of items represents issues recorded most commonly as ‘active concerns’ in clinic letters written to families after disability clinic consultations serving Sunderland and south‐east County Durham, UK . Analyses of these data and prospective pilots of data capture across England using the same Disabilities Terminologies Set have been separately reported .…”

Future of clinical coding

“…These benefits have already been realised in paediatric neurodisability, where clinicians using SNOMED CT were able to show for the first time the complexity of outpatient care, leading to service redesign and considerable expansion in the consultant workforce. 12 To meet the challenges of personalised medicine, linking phenotypes with genome research, and to reduce the considerable variation in healthcare across the UK, clinicians need to embrace this new technology with enthusiasm. SNOMED CT can provide the means to record routine data accurately and in real time, but clinicians working at the doctor-patient interface are the only ones who can ensure it happens.…”