Even at a low level of disability, people with multiple sclerosis (MS) have substantial indirect and informal caregiving costs due to disease progression — with unemployment markedly adding to the economic burden, a Spanish study reports.
The study, “Economic burden of multiple sclerosis in a population with low physical disability,” was published in the journal BMC Public Health.
MS has significant impact on health-related quality of life, with disability and fatigue — two hallmarks of the disease — hindering patients’ ability to work or study. This often results in early unemployment. As MS progresses, many individuals often need the support of caregivers to perform daily life activities.
Limited information is available on MS-associated economic burden imposed on patients by the costs of informal care and loss of employment.
To fill this gap, Spanish researchers evaluated the cost burden of indirect and informal care for 199 people with MS. Participants (mean age 43.9 years, and 60% females) were followed at 19 MS clinical units across Spain. Among the participants, 172 (86.4%) had relapsing-remitting MS, and 27 (13.6%) had primary progressive MS.
The Expanded Disability Status Scale (EDDS) was used to determine each individual’s level of disability. EDDS scoring is done by a trained neurologist, who quantifies a patient’s disability on a scale of zero to 10, in 0.5 increments. EDDS also is used to monitor changes in disability levels through the course of MS. The greater the EDDS score, the higher the disability level.
The team used the 23-item MS Work difficulties questionnaire (MSWDQ-23) to assess the level of hardships participants experienced at their workplace. A patient-reported survey, the questionnaire highlights the extent of psychological and cognitive, physical, and other external difficulties experienced at work by people with the disease. MSWDQ-23 scores range from zero to 100, with a higher score correlating to more significant workplace difficulties.
The study population had a median EDDS score of 2, and a median MSWDQ-23 score of 31.5, indicating an overall low level of physical disability.
Despite this, MS was found to have a marked impact on the individuals’ work and academic activity.
At the time of MS diagnosis, 70.6% of the participants were employed. However, at the start of this study, 9.6 years later, the employment rate among the participants had dropped to 47.2%.
The retirement rate increased from zero at the time of diagnosis to 23.6% at the time of study visit. Most participants retired at a mean age of 43.6 years — and 95.7% of them cited MS progression as the reason for retirement.
Among the student population, 90.9% reported absenteeism in the year before the study visit. During the same time period, 30.9% of employed participants were absent from work. Overall, 10.1% of all participants took sick leaves during the prior year.
Being absent from work, and early retirement, impose several indirect costs in this study population, the researchers found.
Sick leave due to MS resulted in a mean annual cost of €416.6 (US$473.59), while work absenteeism accounted for €763.4 (US$867.83) yearly.
Early retirement due to MS added an additional mean annual cost burden of €5,810.1 (US$6,604.92). The annual costs per patient due to premature work disability or pension increased to €1,816.8 (US$2,065.34).
Caregivers accompanied 72% of the patients for the study visit. The researchers noted that participants’ spouses reportedly spent a minimum of more than 200 hours annually in providing care — more than a full-time job. A total 28.1% of participants required paid professional support for their daily activities, such as person to do housework and a physiotherapist.
Patients also reported the use of assistive devices and adaptations. Crutch or walking stick use was reported by 10.6% of participants, while 8% had some home adaptation to help in their daily activities. Use of non-reimbursable devices was reported by 21.6%.
The mean annual cost of informal caregiving, including activities by professional staff, was €1,328.7 (US$1,510.46). Use of assistive devices added an additional €736.6 (US$ 837.37) yearly.
“MS is responsible for a substantial economic burden due to indirect and informal care costs, even in a population with low physical disability,” the researchers said.
“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,” they concluded.
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