title: Quantifying multifaceted needs captured at the point of care. Development of a Disabilities Terminology Set and Disabilities Complexity Scale.
abstract: To develop a Disabilities Terminology Set and quantify the multifaceted needs of disabled children and their families in a district disability clinic population.
  
  
  
  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.
  
  
  
  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).
  
  
  
  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.
authors.affiliation: City Hospitals Sunderland NHS Foundation Trust, Sunderland.
authors.forename: Karen A
authors.initials: KA
authors.lastname: Horridge
authors.affiliation: City Hospitals Sunderland NHS Foundation Trust, Sunderland.
authors.forename: Carl
authors.initials: C
authors.lastname: Harvey
authors.affiliation: Department of Pharmacy, Health and Well-being, Statistics for Health Sciences, Faculty of Applied Science, University of Sunderland, Sunderland.
authors.forename: Kenneth
authors.initials: K
authors.lastname: McGarry
authors.affiliation: The Child Development Centre, Nottingham City Campus, Nottingham University Hospitals, Nottingham.
authors.forename: Jane
authors.initials: J
authors.lastname: Williams
authors.affiliation: Department of Child Health, Royal Hampshire County Hospital, Hampshire Hospitals NHS Foundation Trust, Winchester.
authors.forename: Gabriel
authors.initials: G
authors.lastname: Whitlingum
authors.affiliation: Parent carer, National Network of Parent Carer Forums, London.
authors.forename: Mary
authors.initials: M
authors.lastname: Busk
authors.affiliation: Speech and Language Therapy Department, City Hospitals Sunderland NHS Foundation Trust, Sunderland.
authors.forename: Suzanne
authors.initials: S
authors.lastname: Fox
authors.affiliation: Guy's and St Thomas' NHS Foundation Trust and King's Health Partners, St Thomas' Hospital, London.
authors.forename: Gillian
authors.initials: G
authors.lastname: Baird
authors.affiliation: Health and Social Care Information Centre, England, UK.
authors.forename: Andy
authors.initials: A
authors.lastname: Spencer
mesh_terms: D000293:Adolescent; D002547:Cerebral Palsy / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D015897:Comorbidity; D019988:Children with Disabilities / Q000706:statistics & numerical data*; D004739:England; D004827:Epilepsy / Q000628:therapy*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D020380:Needs Assessment / Q000706:statistics & numerical data*; D065886:Neurodevelopmental Disorders / Q000628:therapy*; D009468:Neuromuscular Diseases / Q000628:therapy*; D010372:Pediatrics / Q000706:statistics & numerical data*; D019095:Point-of-Care Systems / Q000706:statistics & numerical data*; D009626:Terminology as Topic