Socioeconomic burden of multiple sclerosis: Insights from a cohort in Coimbra, Portugal

Multiple Sclerosis and Related Disorders Socioeconomic burden of multiple sclerosis: Insights from a cohort in Coimbra, Portugal

ABSTRACT

Introduction: Multiple Sclerosis is the leading cause of non-traumatic disability in young adults, burdening patients, caregivers, and healthcare systems. In Portugal, annual direct healthcare costs for Multiple Sclerosis are estimated between twelve thousand three hundred three euros and sixteen thousand four hundred fifty-one euros, with total costs reaching thirty-four thousand four hundred euros per patient. This study aims to characterize Multiple Sclerosis patients in Coimbra, focusing on demographic, clinical, and economic aspects to assess the disease's socioeconomic impact.

Methods: A cost-of-illness study with cross-sectional and retrospective components was conducted between twenty twenty-one and twenty twenty-two at the single referral center for Multiple Sclerosis in Coimbra. Patients completed a survey assessing sociodemographic, clinical, and economic data. Descriptive and comparative non-parametric analyses stratified by Multiple Sclerosis severity (mild EDSS zero to three point five, moderate four to six point five, severe above six point five) were performed.

Results: Among one hundred sixty-three patients (sixty-nine point nine percent female, mean age forty-eight), eighty-seven point one percent had relapsing-remitting Multiple Sclerosis. Higher education was common (sixty-nine point three percent), forty-five point four percent were married. Employment declined with disease severity; nine point four percent of mild EDSS patients were unemployed, while severe EDSS patients were retired. Average annual direct healthcare costs were twelve thousand four hundred six euros, increasing with severity (twelve thousand two hundred sixty-seven euros in mild Multiple Sclerosis to sixteen thousand twenty euros in severe Multiple Sclerosis). Disease-modifying therapies accounted for most direct costs, although these declined in advanced stages, with hospitalization costs rising. Total costs per patient were fourteen thousand nine hundred fifty-four euros (mild Multiple Sclerosis), twenty-eight thousand two hundred eighty-nine euros (moderate Multiple Sclerosis), and thirty-five thousand five hundred fifty-seven euros (severe Multiple Sclerosis), with relapses adding three thousand two hundred seventy-seven euros annually.

Conclusion: This study underscores the substantial economic burden of Multiple Sclerosis, particularly as disease severity progresses. Rising hospitalization and relapse costs highlight the need for cost-effective strategies and policies reducing Multiple Sclerosis-related socioeconomic impacts. Effective management could help mitigate these costs while improving outcomes.

One. Introduction

Multiple Sclerosis is the leading cause of non-traumatic disability in young adults, significantly impacting patients and their caregivers. Typically presenting in early adulthood, Multiple Sclerosis disrupts personal plans for family, career, and life goals. While there is no cure, prompt recognition, appropriate treatment, and adequate social support are essential to improve outcomes.

The socioeconomic consequences of Multiple Sclerosis are substantial. Studies reveal fifteen to thirty percent lower employment rates, reduced earnings, higher absenteeism, and increased work disability among patients with Multiple Sclerosis. Multiple Sclerosis also negatively affects family dynamics, with higher divorce rates reported, especially among men.

Before the introduction of disease-modifying therapies, Multiple Sclerosis-related healthcare costs were primarily driven by hospitalizations. However, disease-modifying therapies have drastically shifted the cost burden, now representing the largest portion of Multiple Sclerosis healthcare expenses.

In Europe, annual disease costs (direct and indirect) range from twenty-two thousand eight hundred euros to fifty-seven thousand five hundred euros in twenty fifteen. In the United States, twenty nineteen data showed average annual medical costs of sixty-five thousand six hundred twelve dollars per patient with Multiple Sclerosis,

with an additional twenty-two thousand eight hundred seventy-five dollars in indirect and nonmedical costs, primarily due to lost earnings, absenteeism, and presenteeism.

In Portugal, the mean annual cost per patient by disease severity (mild, moderate and severe Multiple Sclerosis) has been estimated between sixteen thousand five hundred euros and thirty-four thousand four hundred euros, with disease-modifying therapies being the largest contributor. However, family support plays a significant role, reflecting insufficient public support systems. Direct healthcare costs ranged from twelve thousand three hundred three euros to sixteen thousand four hundred fifty-one euros, and unemployment rates were high, with employment dropping from seventy-five percent at EDSS one to two to forty percent at EDSS three. These findings, based on data from twenty fifteen to twenty sixteen, may now be outdated due to the availability of newer disease-modifying therapies.

Coimbra is a city in central Portugal, part of a region comprising eighteen other municipalities. CHUC, the city's only public tertiary referral hospital and the largest hospital in Portugal, serves patients from Coimbra and surrounding districts. Unlike previous Portuguese studies, which relied on questionnaires or Delphi panels without linkage to hospital records, this cohort provides comprehensive real-world data, highlighting its unique value for understanding disease patterns and management in the region.

This study aims to characterize the demographic, social, clinical, and economic features of Multiple Sclerosis patients in Coimbra, providing an updated estimate of the socioeconomic burden of the disease.