Background Individuals using home mechanical ventilation (HMV) frequently choose to live at home for quality of life, despite financial burden. Previous studies of healthcare utilisation and costs do not consider public and private expenditures, including caregiver time.
Objectives To determine public and private healthcare utilisation and costs for HMV users living at home in two Canadian provinces, and examine factors associated with higher costs.
Methods Longitudinal, prospective observational cost analysis study (April 2012 to August 2015) collecting data on public and private (out-of-pocket, third-party insurance, caregiving) costs every 2 weeks for 6 months using the Ambulatory and Home Care Record. Functional Independence Measure (FIM) was used at baseline and study completion. Regression models examined variables associated with total monthly costs selected a priori using Andersen and Newman’s framework for healthcare utilisation, relevant literature, and clinical expertise. Data are reported in 2015 Canadian dollars ($C1=US$0.78=₤0.51=€0.71).
Results We enrolled 134 HMV users; 95 with family caregivers. Overall median (IQR) monthly healthcare cost was $5275 ($2291–$10 181) with $2410 (58%) publicly funded; $1609 (39%) family caregiving; and $141 (3%) out-of-pocket (<1% third-party insurance). Median healthcare costs were $8733 ($5868–$15 274) for those invasively ventilated and $3925 ($1212–$7390) for non-invasive ventilation. Variables associated with highest monthly costs were amyotrophic lateral sclerosis (1.88, 95% CI 1.09 to 3.26, P<0.03) and lower FIM quintiles (higher dependency) (up to 6.98, 95% CI 3.88 to 12.55, P<0.0001) adjusting for age, sex, tracheostomy and ventilation duration.
Conclusions For HMV users, most healthcare costs were publicly supported or associated with family caregiving. Highest costs were incurred by the most dependent users. Understanding healthcare costs for HMV users will inform policy decisions to optimise resource allocation, helping individuals live at home while minimising caregiver burden.
- assisted ventilation
- non-invasive ventilation
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Contributors MLN and LR conceived the study concept and planned the study. MLN coordinated participant recruitment, collected data, and cleaned and managed the data. MW collected data. DG and PCC provided expertise regarding the Ambulatory and Home Care Record. BZ did cost calculations and data analysis. MLN and LR wrote the manuscript. All authors aided in participant recruitment, provided feedback and revisions, and approved the final manuscript.
Funding This work was funded by the Ontario Lung Association (Ontario Respiratory Care Society, Ontario Thoracic Society), Canadian Lung Association (Canadian Respiratory Health Professionals) and the ALS Society of British Columbia. MLN received a Canadian Thoracic Society Research Fellowship award during the conduct of this study. LR holds a Canadian Institutes of Health Research New Investigator award.
Competing interests None declared.
Ethics approval Research Ethics Boards of the University of Toronto, University of British Columbia, the Joint West Park-Toronto Central Community Care Access Centre-Toronto Grace Board, and Children’s Hospital of Eastern Ontario.
Provenance and peer review Not commissioned; externally peer reviewed.
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