Multiple Sclerosis and Outpatient Physician Care in the Last Years of Life

BACKGROUND AND OBJECTIVES: Patients with multiple sclerosis (MS) require increasing health care support, particularly in the last year of life. Despite the benefits of palliative care in addressing symptom burden and improving quality of life, its integration into MS care remains inconsistent. This study aimed to characterize health care utilization and palliative care access among people with MS in the last years of life and to identify key factors associated with hospital death and receipt of palliative care. METHODS: A retrospective cohort study was conducted using linked health administrative databases in Ontario, Canada. The cohort consisted of all decedents aged 18 years or older who died in Ontario between April 2016 and March 2020, and we compared health care utilization in decedents with MS to the rest of the cohort. The identification of MS cases was based on a validated algorithm. Demographics, health care utilization, palliative care involvement, and medical interventions were analyzed. Predictors of palliative care receipt and hospital deaths were evaluated using multivariable logistic regression models. RESULTS: MS decedents (n = 1,975; mean age 68 years; 66.4% female) were younger and had fewer comorbidities than non-MS decedents (n = 500,904; mean age 77). High percentage of MS decedents had outpatient neurology visits in the last 5 years of life (49.4%) but a steep decline closer to death (2.7% in the last month). Palliative care use was similar (58.0% vs 56.9%) but occurred earlier in MS (61.9% vs 59.6% in the last 5 years). Multivariable regression showed that rural residence was associated with increased odds of hospital death (odds ratio [OR] 1.81, 95% CI 1.21-2.70) and lower odds of receiving palliative care (OR 0.74, 95% CI 0.55-0.99), while receiving palliative care within the last 5 years of life reduced the odds of hospital death (OR 0.47, 95% CI 0.37-0.60). Higher comorbidity and increased outpatient visits to urology were associated with a greater odd of receiving palliative care (OR 3.64, 95% CI 2.50-5.29 and OR 1.47, 95% CI 1.20-1.80). DISCUSSION: Although palliative care receipt was comparable between MS and non-MS decedents, rural disparities and high hospital deaths persist. Earlier palliative integration, particularly through neuropalliative care, could improve quality of life and reduce hospitalizations.

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Journal
Neurology
Published
2026-05-08
DOI
https://doi.org/10.1212/wnl.0000000000218067
Primary Topic
Multiple Sclerosis Research Studies
Type
article
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0.00
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article

Multiple Sclerosis and Outpatient Physician Care in the Last Years of Life

Michelle Howard, Stephen Fung, Christine L. Watt, Usha Ramanathan et al.
Neurology
Multiple Sclerosis Research Studies
article

Multiple Sclerosis and Outpatient Physician Care in the Last Years of Life

Michelle Howard, Stephen Fung, Christine L. Watt, Usha Ramanathan, Woojin Kim, Colleen Webber, Samantha Yoo, Peter Tanuseputro, Dalia Rotstein
article en

Abstract

BACKGROUND AND OBJECTIVES: Patients with multiple sclerosis (MS) require increasing health care support, particularly in the last year of life. Despite the benefits of palliative care in addressing symptom burden and improving quality of life, its integration into MS care remains inconsistent. This study aimed to characterize health care utilization and palliative care access among people with MS in the last years of life and to identify key factors associated with hospital death and receipt of palliative care. METHODS: A retrospective cohort study was conducted using linked health administrative databases in Ontario, Canada. The cohort consisted of all decedents aged 18 years or older who died in Ontario between April 2016 and March 2020, and we compared health care utilization in decedents with MS to the rest of the cohort. The identification of MS cases was based on a validated algorithm. Demographics, health care utilization, palliative care involvement, and medical interventions were analyzed. Predictors of palliative care receipt and hospital deaths were evaluated using multivariable logistic regression models. RESULTS: MS decedents (n = 1,975; mean age 68 years; 66.4% female) were younger and had fewer comorbidities than non-MS decedents (n = 500,904; mean age 77). High percentage of MS decedents had outpatient neurology visits in the last 5 years of life (49.4%) but a steep decline closer to death (2.7% in the last month). Palliative care use was similar (58.0% vs 56.9%) but occurred earlier in MS (61.9% vs 59.6% in the last 5 years). Multivariable regression showed that rural residence was associated with increased odds of hospital death (odds ratio [OR] 1.81, 95% CI 1.21-2.70) and lower odds of receiving palliative care (OR 0.74, 95% CI 0.55-0.99), while receiving palliative care within the last 5 years of life reduced the odds of hospital death (OR 0.47, 95% CI 0.37-0.60). Higher comorbidity and increased outpatient visits to urology were associated with a greater odd of receiving palliative care (OR 3.64, 95% CI 2.50-5.29 and OR 1.47, 95% CI 1.20-1.80). DISCUSSION: Although palliative care receipt was comparable between MS and non-MS decedents, rural disparities and high hospital deaths persist. Earlier palliative integration, particularly through neuropalliative care, could improve quality of life and reduce hospitalizations.

NeurologyVol. 106(11)
St. Michael's Hospital (CA), University of Ottawa (CA), University of Toronto (CA), Ottawa Hospital (CA), Canadian Hospice Palliative Care Association (CA), Bruyère (CA), University of Hong Kong (HK), McMaster University (CA)
Openalex Percentile: Top 7%
Multiple Sclerosis Research Studies
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