Multiple Sclerosis Patients Face a Staggering Economic Burden, Even With Low Physical Disability

Regardless of their level of disabilty, patients with multiple sclerosis face a substantial financial burden.

Patients with multiple sclerosis (MS), regardless of their level of disabilty, face a significant economic burden due to informal and indirect costs related to the disease, according to a study from Spanish researchers reporting in BMC Public Health.

“MS has classically been reported as being responsible for high indirect costs and other substantial economic burden," the researchers wrote. "Symptom severity has strong impact on both work productivity and workforce participation."

Researchers conducted a cross-sectional, multicenter, non-interventional study to evaluate the financial burden faced by adult patients with relapsing-remitting MS (RRMS) and primary progressive MS (PPMS). A total of 199 patients from 19 MS clinics across Spain were included. Participants had a mean age of 43.9 ± 10.5 years, 60.2% were female, 86.1% had RRMS, and 13.9% has PPMS.

In the study, researchers assessed clinical variables and calculated costs of healthcare resources associated with the disease. They used the 29-item Multiple Sclerosis Impact Scale (MSIS-29) to measure the physical and the psychological effects of MS from patients’ points of view. They used the Expanded Disability Status Scale (EDSS) to evaluate disability and the 23-item Multiple Sclerosis Work Difficulties Questionnaire (MSWDQ-23) to assess work performance related to the physical, cognitive, and psychological elements of disease burden. Formal and informal caretakers completed the Caregiver Strain Index (CSI) whenever possible. The human capital method was used to calculate informal and indirect care costs. They also estimated costs incurred from the use of professional support services and caregivers.

Researchers found the study population had a median EDSS score 2.0 and a median MSWDQ-23 score of 31.5. After being diagnosed with MS, the number of employed patients fell from 70.6% to 47.2% and the number of retired patients rose by 23.6%. The mean age of retired participants was 43.6 years (±10.5 years). Of the total patient population, 10.1% reported taking periods of sick leave. Absenteeism was observed in 90.9% of patients who were students and 30.9% who were employed. A total of 28.1% of patients required professional support to carry out their activities of daily life. Most of the people patients hired either performed housework or provided physiotherapy. Results of the MSWDQ-23 and MSIS-29 indicated the main effects of MS on patients’ activities were caused by external and physicals barriers.

During study visits, 36.2% of patients were accompanied by formal caregivers, while 44.7% were joined by informal caregivers. A total of 72 caregivers completed the CSI and researchers found that 23.6% reported high levels of strain.

Costs descriptions were separately summarized in the student and employed populations. The study analysis included only indirect and informal costs. The annual mean work-related costs accrued due to the disease were found to be:

  • $473.49 ± $2307.42 for sick leave
  • $867.64 ± $3593.54 for work absenteeism
  • $6603.47 ± $14,955.86 for premature retirement
  • $2064.88 ± $10,945.77 for premature work disability or pensioners

The sum of all indirect work-related costs was determined to be an average of $10,009.48 annually per patient. The mean yearly cost to hire professional staff was $1167.64 ± $5255.45, and the cost of informal caregiving activities was $343.05 ± $1318.98. Combined, all caregiving activities amounted to an average cost of $1510.68 per patient per year. The mean cost of assistive devices, such as crutches or canes, was found to be $837.18 annually.

“This study shows that indirect and caregiving costs are incurred even at low levels of physical disability. Effective therapeutic interventions to improve the management of early symptoms as well as implementing workplace strategies focused on job retention may be essential to decrease the high economic burden of MS,” researchers concluded.


García-Domínguez JM, Maurino J, Martínez-Ginés ML, et al. Economic burden of multiple sclerosis in a population with low physical disability. BMC Public Health. 2019;19:609. doi: 10.1186/s12889-019-6907-x.

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