J Pediatr Gastroenterol Nutr. 2022 Oct 1;75(4):466-472. doi: 10.1097/MPG.0000000000003545.Epub 2022 Jun 27.

Wael El-Matary ^1 2 3, Julia Witt ⁴, Charles N Bernstein ^3 5, Kevan Jacobson ⁶, David Mack ⁷, Anthony Otley ⁸, Thomas D Walters ^9 10, Hien Q Huynh ¹¹, Jennifer deBruyn ¹², Anne M Griffiths ^9 10 13, Eric I Benchimol ^7 9 10 13

Author information

¹From the Section of Pediatric Gastroenterology, Department of Pediatrics, Max Rady College of Medicine, Rady Faculty of Medicine, University of Manitoba, Winnipeg, Canada.

²Children's Hospital Research Institute of Manitoba (CHRIM), Winnipeg, Canada.

³IBD Clinical and Research Centre, University of Manitoba, Winnipeg, Canada.

⁴Department of Economics, University of Manitoba, Winnipeg, Canada.

⁵Section of Gastroenterology, Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Medicine, University of Manitoba, Winnipeg, Canada.

⁶Department of Paediatrics, Division of Gastroenterology, Hepatology and Nutrition, Faculty of Medicine, British Columbia Children's Hospital and British Columbia Children Hospital Research Institute, Vancouver, BC, Canada.

⁷CHEO Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.

⁸Division of Gastroenterology & Nutrition, Department of Paediatrics, IWK Health and Dalhousie University, Halifax, Nova Scotia, Canada.

⁹SickKids Inflammatory Bowel Disease Centre, Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children, Toronto, ON, Canada.

¹⁰Department of Paediatrics and Institute of Health Policy, Management and Evaluation, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.

¹¹Edmonton Pediatric Inflammatory bowel disease Clinic (EPIC), Division of Pediatric Gastroenterology and Nutrition, Department of Pediatrics, University of Alberta, Stollery Children's Hospital, Edmonton, AB, Canada.

¹²Division of Gastroenterology, Alberta Children's Hospital, University of Calgary, Calgary, AB, Canadaand.

¹³Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada.

Abstract

Objectives: Data on pediatric inflammatory bowel disease (IBD)-associated indirect and out-of-pocket (OOP) costs are limited. We aimed to estimate indirect (lost work hours and productivity) and OOP pediatric IBD-associated costs in Canada.

Methods: In a nation-wide cross-sectional analysis, caregivers of children with IBD were invited to complete a questionnaire on lost work hours and OOP costs related to IBD in the 4 weeks prior to the survey. Participants were reinvited to periodically answer the same questionnaire every 3-9 months for 2 years. Lost productivity was calculated using the Human Capital method. Costs were reported in 2018 inflation-adjusted Canadian dollars. Predictors of high cost users (top 25%) were examined using binary logistic regression.

Results: Consecutive 243 (82 incident cases) of 262 (92.7%) approached participants completed the first survey with a total of 450 surveys longitudinally completed over 2 years. The median annual indirect cost per patient was $5966 (IQR $1809-$12,676), with $5721 (IQR $1366-$11,545) for Crohn's disease (CD) and $7007 (IQR $2428-$14,057) for ulcerative colitis (UC) ( P = 0.11). The annual median per patient OOP costs were $4550 with $4550 for CD and $5038 for UC ( P = 0.53). Longer travel distance to clinic was associated with higher OOP costs (odds ratio = 4.55; P < 0.0001; 95% confidence interval: 1.99-10.40).

Conclusions: Indirect and OOP IBD-associated costs are substantial and more likely to affect families living in remote communities.

Trial registration: ClinicalTrials.gov NCT03522623.