title: Dysphagia in children with severe generalized cerebral palsy and intellectual disability.
abstract: This study assessed the clinical indicators and severity of dysphagia in a representative sample of children with severe generalized cerebral palsy and intellectual disability. A total of 166 children (85 males, 81 females) with Gross Motor Function Classification System Level IV or V and IQ<55 were recruited from 54 daycare centres. Mean age was 9 years 4 months (range 2 y 1 mo-19 y 1 mo). Clinically apparent presence and severity of dysphagia were assessed with a standardized mealtime observation, the Dysphagia Disorders Survey (DDS), and a dysphagia severity scale. Additional measures were parental report on feeding problems and mealtime duration. Of all 166 participating children, 1% had no dysphagia, 8% mild dysphagia, 76% moderate to severe dysphagia, and 15% profound dysphagia (receiving nil by mouth), resulting in a prevalence of dysphagia of 99%. Dysphagia was positively related to severity of motor impairment, and, surprisingly, to a higher weight for height. Low frequency of parent-reported feeding problems indicated that actual severity of dysphagia tended to be underestimated by parents. Proactive identification of dysphagia is warranted in this population, and feasible using a structured mealtime observation. Children with problems in the pharyngeal and esophageal phases, apparent on the DDS, should be referred for appropriate clinical evaluation of swallowing function.
authors.affiliation: Intellectual Disability Medicine, Department of General Practice, Erasmus MC, Rotterdam, the Netherlands. e.calis@psyq.nl
authors.forename: Elsbeth Ac
authors.initials: EA
authors.lastname: Calis
authors.forename: Rebekka
authors.initials: R
authors.lastname: Veugelers
authors.forename: Justine J
authors.initials: JJ
authors.lastname: Sheppard
authors.forename: Dick
authors.initials: D
authors.lastname: Tibboel
authors.forename: Heleen M
authors.initials: HM
authors.lastname: Evenhuis
authors.forename: Corine
authors.initials: C
authors.lastname: Penning