Multiple Sclerosis Patients Identify Symptoms that Worsen Quality of Life

Loss of health-related quality of life is caused mostly by balance problems, muscle stiffness, and depression in people with relapsing-remitting multiple sclerosis (RRMS), and for those with progressive MS, the causes are muscle rigidity, paralysis, weakness, and pain, according to a study based on patient-reported outcomes.

The study, “The disease burden of Multiple Sclerosis from the individual and population perspective: Which symptoms matter most?” was published in the journal Multiple Sclerosis and Related Disorders.

Loss of health-related quality of life in MS depends on multiple reasons, including symptoms affecting many functional domains. Studies are needed to evaluate the specific affects of each symptom on patients’ quality of life, in a careful and controlled way. Getting this information is key for successful symptom management and patient care.

Recognizing that need, a team of researchers set out to thoroughly investigate the extent to which specific MS symptoms affected patients’ quality of life, after controlling the results for multiple clinical, demographic, and socio-economic factors. 

The study analyzed patient-reported surveys of 611 patients with RRMS and 244 with progressive MS, included in the Swiss Multiple Sclerosis Registry (NCT02980640), which is an ongoing survey addressing the living conditions of MS patients in Switzerland.

Health-related quality of life was assessed by a patient self-report called the European Quality of Life 5- Dimension (EQ-5D-5L) index, comprising the dimensions of mobility, self-care, usual activities, pain/discomfort, and anxiety/depression.

In addition, patients were asked to range their overall health from 0% to 100%, corresponding to “the worst” and the “best imaginable” health, respectively, on an EQ-Visual Analogue Scale (EQ-VAS).

Researchers explored the correlation between the patient-reported levels of quality of life and 20 MS-related symptoms, their socio-demographic and clinical information. Independent analyses were done for RRMS and PPMS patients, and the impact of symptoms was evaluated both at individual and population levels.

Overall, the results showed that depending on the disease course — whether patients were affected by a steadily progressing MS or a disease with intermittent periods of relapse and remission (RRMS) — quality of life was affected by different symptoms.

The most frequent symptoms reported by patients with RRMS were a burning or prickling sensation, or paresthesia (77.1%), fatigue (74.1%), and weakness (54.8%), while those with progressive MS complained mostly about gait (90.6%) and balance problems (84%), as well as fatigue (83.2%).

At the individual level, loss of health-related quality of life — measured by EQ-5D-index — among those with RRMS was predominantly associated with gait problems, tremor, and difficulties in balance. Patients who experienced these problems also reported a lower quality of life corresponding to a median loss of 6.5, 5.3, and 5.1 points, respectively, in the EQ-5D-index. That is in comparison with those not experiencing those difficulties (the lower the EQ-5D-index, the worse the health-related quality of life).

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In patients with progressive MS, muscle rigidity (spasticity), paralysis, and bowel problems were the symptoms most contributing to the worsening of their quality of life, lowering 10, 8.7, and 5.5 points in the EQ-5D-index.

In addition, when quality of life was measured with the visual analogue scale (EQ-VAS), different symptoms gained importance. Namely, balance problems, depression, dizziness, and spasticity in RRMS patients were the most strongly associated with loss in self-perceived health, whereas for progressive MS patients it was weakness, pain, and paralysis.

When researchers combined quality of life data from EQ-5D and EQ-VAS indexes with the frequency of each symptom in the MS population, they determined the symptoms that contributed the most for reducing the quality of life at the population level.

The RRMS population was affected mostly by balance problems, spasticity, and depression, while strongest losses of quality of life among the progressive MS population were caused by spasticity, paralysis, weakness, and pain.

“Many symptoms with the largest effects in individuals also substantially contribute to the population disease burden,” the researchers wrote.

The findings may be used to help manage MS and to optimize healthcare resources.

“From a symptom management perspective, assessing the relative importance among the different symptoms could aid healthcare decisions. Moreover, population level data on the MS symptom burden may guide efficient allocation of healthcare resources” the team concluded.