Dysphagia in children with severe generalized cerebral palsy and intellectual disability

TLDR

This study assessed the clinical indicators and severity of dysphagia in a representative sample of children with severe generalized cerebral palsy and intellectual disability. The study recruited 166 children (85 males, 81 females) with Gross Motor Function Classification System Level IV or V and IQ < 55, mean age 9 y 4 mo, from 54 daycare centres, and evaluated dysphagia severity using a standardized mealtime observation (DDS), a severity scale, and parental reports of feeding problems and mealtime duration. Dysphagia was found in 99 % of participants (1 % none, 8 % mild, 76 % moderate‑to‑severe, 15 % profound), correlated with motor impairment severity and higher weight‑for‑height, and was often underestimated by parents; proactive identification via structured observation is recommended, with referral for pharyngeal/esophageal dysfunction.

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&lt;55 were recruited from 54 daycare centres. Mean age was 9 years 4 months (range 2y 1mo–19y 1mo). 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.