Abstract
RATIONALE/OBJECTIVES: Dysphagia is frequently observed in children with Down syndrome (DS) and significantly impacts both the child and their caregivers. We sought to understand how dysphagia affects feeding-related and general quality of life in DS. We also explored reported caregiver adherence and barriers associated with diet modifications. METHODS: As part of an NIH/NHLBI-sponsored study evaluating pulmonary health in children with DS, we enrolled 37 children with DS ages 3-17 years (mean age 9.50) who had a swallow study within 5 years. Swallow studies that could be scored (n = 30) were assessed using the 8-point Penetration-Aspiration Scale (PAS) and the Childhood Dysphagia Management Scale (CDMS). Caregivers completed the Feeding Swallowing Impact Scale (FS-IS), Pediatric Quality of Life Inventory (PedsQL), and pilot version of the Pediatric Diet Modification Survey (PDMS-P), assessing adherence and barriers to following diet modifications. We compared outcomes across PAS and CDMS scores and to other published cohorts. RESULTS: On the PDMS-P, parents reported high levels of adherence to diet modifications mean (SD) score 5.44 (0.80) on a 6-point scale. For patients with current diet modifications, 54 % of caregivers endorsed barriers. Mean PedsQL score was 60.68 (SD = 15.59) on a 100-point scale and mean total FS-IS score was 2.03 (0.43). PedsQL and FS-IS scores were not significantly different across dysphagia severity by PAS and CDMS impact scores. Mean PAS score was 4.10 (SD = 3.01) and CDMS score distribution was 37 % low, 43 % medium, and 20 % high impact. CONCLUSIONS: Across all levels of dysphagia impact and severity, caregivers of children with DS report feeding/swallowing difficulties and impacts to quality of life. Measurement of caregiver impact, quality of life, and adherence to their child's diet modifications yields family-centered insights important to effective patient care and pragmatic dysphagia research.