title: Prospective pilots of routine data capture by paediatricians in clinics and validation of the Disabilities Complexity Scale.
abstract: To pilot prospective data collection by paediatricians at the point of care across England using a defined terminology set; demonstrate feasibility of data collection and utility of data outputs; and confirm that counting the number of needs per child is valid for quantifying complexity.
  
  
  
  Paediatricians in 16 hospital and community settings collected and anonymized data. Participants completed a survey regarding the process. Data were analysed using R version 3.1.2.
  
  
  
  Overall, 8117 needs captured from 1224 consultations were recorded. Sixteen clinicians responded positively about the process and utility of data collection. The sum of needs varied significantly (p<0.01) by level of gross motor function ascertained using the Gross Motor Function Classification System for children with cerebral palsy; epilepsy severity as defined by level of expertise required to manage it; and by severity of intellectual disability.
  
  
  
  Prospective data collection at the point of clinical care proved possible without disrupting clinics, even for those with the most complex needs, and took the least time when done electronically. Counting the number of needs was easy to do, and quantified complexity in a way that informed clinical care for individuals and related directly to validated scales of functioning. Data outputs could inform more appropriate design and commissioning of quality services.
authors.affiliation: City Hospitals Sunderland NHS Foundation Trust, Sunderland, UK.
authors.forename: Karen A
authors.initials: KA
authors.lastname: Horridge
authors.affiliation: Statistics for Health Sciences, Department of Pharmacy, Health and Well-being, Faculty of Applied Science, University of Sunderland, Sunderland, UK.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Mcgarry
authors.affiliation: The Child Development Centre, Nottingham City Campus, Nottingham University Hospitals, Nottingham, UK.
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, UK.
authors.forename: Gabriel
authors.initials: G
authors.lastname: Whitlingum
mesh_terms: D002547:Cerebral Palsy / Q000628:therapy*; D002648:Child; D003625:Data Collection / Q000379:methods*; D019988:Children with Disabilities / Q000706:statistics & numerical data*; D004739:England; D004827:Epilepsy / Q000628:therapy*; D006302:Health Services Research / Q000379:methods*; D006801:Humans; D020380:Needs Assessment / Q000706:statistics & numerical data*; D000072143:Pediatricians / Q000706:statistics & numerical data*; D010865:Pilot Projects; D019095:Point-of-Care Systems / Q000706:statistics & numerical data*; D011446:Prospective Studies; D012720:Severity of Illness Index; D009626:Terminology as Topic