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Quantifying multifaceted needs captured at the point of care. Development of a D isabilities T erminology S et and D isabilities C omplexity S cale
Author(s) -
Horridge Karen A,
Harvey Carl,
McGarry Kenneth,
Williams Jane,
Whitlingum Gabriel,
Busk Mary,
Fox Suzanne,
Baird Gillian,
Spencer Andy
Publication year - 2016
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/dmcn.13102
Subject(s) - cerebral palsy , terminology , service (business) , population , special needs , intellectual disability , family medicine , medicine , psychology , psychiatry , marketing , business , linguistics , philosophy , environmental health
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.