Healthcare utilization and costs of pediatric home mechanical ventilation in Canada

Abstract

Background and Objectives: Children using home mechanical ventilation (HMV) live at home for better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs do not consider public and private expenditures, including family caregiver time. We sought to determine public and private healthcare utilization and costs for children using HMV and to examine factors associated with highest costs. Methods: Longitudinal, prospective, observational cost analysis study (2012-2014) on public and private (out-of-pocket, 3rd party insurance, caregiving) costs every 2 weeks for 6 months using the Ambulatory Home Care Record. Functional Independence Measure (FIM), WeeFIM and Caregiver Impact Scale (CIS) were collected at baseline and study completion. Regression modelling examined a priori selected variables associated with monthly costs using Andersen & Newman’s framework for healthcare utilization. 2015 Canadian dollars ($1CAD=$0.78USD=€0.71). Results: We enrolled 42 children and their caregivers. Overall median (interquartile range) monthly healthcare cost was $12,131 ($8,159-15,958) comprising $9,929 (89%) for family caregiving hours, $996 (9%) publicly funded and $252 (2%) out-of-pocket ( Conclusions: For HMV children, most healthcare costs were from family caregiving. The most dependent children had highest costs. The financial burden to family caregivers is substantial and must be considered in future policy decisions related to pediatric HMV.