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Abstract
Objective To describe health care service utilization and cost for decedents with and without amyotrophic lateral sclerosis (ALS) in the last year of life.
Methods Using linked health administrative data, we conducted a retrospective, population-based cohort study of Ontario, Canada, decedents from 2013 to 2015. We examined demographic data, rate of utilization, and cost of health care services in the last year of life.
Results We identified 283,096 decedents in Ontario, of whom 1,212 (0.42%) had ALS. Decedents with ALS spent 3 times as many days in an intensive care unit (ICU) (mean 6.3 vs 2.1, p < 0.001), and twice as many days using complex continuing care (mean 12.7 vs 6.0, p < 0.001) and home care (mean 99.1 vs 41.3, p < 0.001). A greater percentage of decedents with ALS received palliative home care (44% vs 20%, p < 0.001) and palliative physician home visits (40% vs 18%, p < 0.001) than decedents without ALS. Among decedents with ALS, a palliative physician home visit in the last year of life was associated with reduced adjusted odds of dying in hospital (odds ratio 0.65, 95% confidence interval 0.48–0.89) and fewer days spent in the ICU. Mean cost of care in the last year of life was greater for those with ALS ($68,311.98 vs $55,773.48, p < 0.001).
Conclusions In this large population-based cohort of decedents, individuals with ALS spent more days in the ICU, received more community-based services, and incurred higher costs of care in the last year of life. A palliative care physician home visit was associated with improved end of life outcomes; however, the majority of patients with ALS did not access such services.
Glossary
- ALS=
- amyotrophic lateral sclerosis;
- CI=
- confidence interval;
- ED=
- emergency department;
- ICD-10=
- International Classification of Diseases–10;
- MOHLTC=
- Ministry of Health and Long-Term Care;
- OR=
- odds ratio;
- PEG=
- percutaneous endoscopic gastrostomy
Footnotes
Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.
Editorial, page 985
CME Course: NPub.org/cmelist
- Received April 30, 2019.
- Accepted in final form July 19, 2019.
- © 2019 American Academy of Neurology
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