Assessing the socioeconomic burden in pediatric inflammatory bowel disease-a survey of families and national providers.

Objectives: Despite rapidly rising rates of pediatric inflammatory bowel disease (IBD), literature exploring the financial burden on families of children with IBD remains limited. This study sought to better understand the socioeconomic burden of pediatric IBD on families at our institution and compare IBD provider practices and perceptions across the country.

Methods: Two separate electronic surveys exploring demographics, financial impacts of an IBD diagnosis, and perceptions around IBD care were developed for patient families and IBD providers respectively. Descriptive statistics and regression analysis took place to assess survey responses. Thematic analysis was also undertaken to qualitatively assess family survey comments.

Results: Patient survey results (N = 69) indicated missed time off work and school and dietary therapy costs as considerable burdens on families. Nearly 60% of respondents also reported significant mental health impacts on the family. Provider data (N = 18) suggests some variability in clinical practice, allied health support, and financial support for families. However, providers almost universally recognize the financial, mental health, and employment impacts on families as significant socioeconomic burdens on families.

Conclusions: This is the first study in Canada to directly explore national provider practices and the socioeconomic burden on families of children with IBD. Results indicate a good correlation between provider awareness and the increased financial burden on families but suggest ongoing care gaps to address impacts on employment, mental health, and out-of-pocket costs. This data suggests that various quality improvement opportunities for research and advocacy exist to better support families, both locally and beyond.