A59-16 Quality of Life Over Time for Caregivers of Children With Dysphagia

Rationale Dysphagia negatively affects the quality of life (QOL) of both the affected child and their caregivers (Simione 2023). The Feeding/Swallowing Impact Survey (FSIS) was developed as a standardized tool to assess family challenges related to caring for children with feeding dysfunction (Lefton-Greif 2014). Limited research has characterized FSIS scores over time, the results of which could guide multidisciplinary interventions to improve patient and caregiver QOL. Methods A retrospective observational study analyzed data from the electronic medical record of Seattle Children’s Hospital. Eligible participants included patients age 0-21 years who completed a swallowing study - either Fiberoptic Endoscopic Evaluation of Swallowing (FEES) or Videofluoroscopic Swallow Study (VFSS) - between 2020 and 2025, along with their caregivers who completed the FSIS. Demographic and clinical data were abstracted to characterize swallow function, medical diagnoses, and relevant otolaryngologic interventions as well as FSIS scores. Descriptive statistical analyses were performed comparing total and subcategory FSIS scores (activities of daily living (ADL), caregiver concern, and feeding difficulties) against age cohorts. Results Participants included 843 patients with median age of 2.7 years, interquartile range of 1.42 - 5.44 years, 39% female. Racial demographics included 57% White, 7% Asian, 4% Black, and 32% other. Statistical analysis showed FSIS total scores decreased over time when comparing <6 months, 6-12 month, 12 month-2 year, and 2 years+ age groups (Figure 1). This held true for the ADL and caregiver concern subcategory, but not for the feeding difficulty subcategory. Conclusions The progressive decrease in total FSIS scores suggests that the lowest QOL occurs in caregivers of the youngest children. Interestingly, the reported feeding difficulty subcategory remained steady over time despite the decrease in worry and reported improved ability to perform other ADLs over time, potentially reflecting the challenging reality of providing dysphagia-related care to a child of any age. Our data suggest that interventions aimed at relieving worry and supporting the ADLs of these caregiver-patient dyads should be offered as soon as possible, perhaps before age 1 year, to support those at risk for the lowest QOL. This abstract is funded by: None