Patients and Neurologists Perceive MS and Its Symptoms Very Differently

A study observed vast differences between how patients with multiple sclerosis (MS) perceive their disease compared with neurologists.

“While neurologists tended to overestimate the consequences and symptoms of the disease, for most patients, the disease impact on activities did not appear to be as significant, with more complaints regarding non-physical symptoms,” according to the researchers.

The study consisted of two groups: neurologists (n=182) and patients with MS (n=317). All participants answered questions about sociodemographic data, disease impact on quality of life, symptom perception, and concerns and issues related to disease care.

There were significant differences between the perceptions of patients and neurologists regarding orientation and information given during medical appointments, as well as patient participation in treatment and therapy choice.

When evaluating the impact on quality of life, more than 70% of neurologists perceived that patients’ lives were most affected by autonomy to work and travel and future planning, but nearly half of patients said disease monitoring had no impact on their lives.

Neurologists perceived physical symptoms—like ambulation issues, imbalance, falls, and urinary incontinence—interfered most with quality of life. However, patients perceived non-physical symptoms—like fatigue, pain, and cognitive and memory problems—as more significant. Patients with primary progressive MS were more likely than patients with other disease phenotypes to complain about ambulation issues, imbalance, and falls.

“Although neurologists described involving patients in treatment decisions and providing them with appropriate orientation during medical appointments, the opposite was reported by patients. These results may help to improve treatment adherence and disease outcomes by redefining the doctor-patient relationship,” the researchers concluded.