Treatment Burden for Pediatric Eosinophilic Esophagitis: A Cross-Sectional Survey of Carers

Abstract

OBJECTIVE: To investigate treatment burden and impact on health-related quality of life (HRQoL) for children with eosinophilic esophagitis (EoE) and their carers. METHODS: An Australian cross-sectional online survey of carers of children aged 18 years and under with EoE between September 2018 to February 2019. RESULTS: Of 181 complete responses, more than half of carers experienced reduced HRQoL since their child's diagnosis. Reported mean out-of-pocket expenditure for healthcare utilization (practitioner visits and treatment) was AUD$3064.3 annually. Backwards stepwise linear regression models showed that reduced ability to manage on income and missing more than one workday in the previous 30 days were significant predictors of lower carer HRQoL. Ability to manage on the current income described as "difficult some of the time," "difficult all of the time," and "impossible" were associated with lower child HRQoL. When compared with EoE diagnosis between 13 and 23 months of age, diagnosis between 2 and 4 years was a significant predictor of lowered child HRQoL. CONCLUSIONS: Pediatric EoE in Australia leads to high treatment burden for carers. Changes in carer employment and income manageability can negatively impact carer psychosocial wellbeing. Carers of children with EoE need to be informed about available financial and social support to reduce treatment-related burden and improve the quality of life of both the carer and child.