Caregivers of children with Down Syndrome adapt their child’s diet and experience barriers and impacts on quality of life.

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. 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. 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. 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.