Abstract
Objective To identify key symptoms reported by patients and observed by clinicians due to the wearing-off effect (WOE) associated with multiple sclerosis (MS) disease modifying therapies (DMTs) and to better understand patient and physician perspectives on the WOE.
Method Thirty adults with MS and 9 clinicians underwent structured interviews, focusing on disease experience, relapses and remission, and WOE symptoms. Patients were also asked about their experience with their neurologists, while clinicians were asked about their perspective on the WOE.
Results All patients recognized ≥1 WOE-associated symptoms, irrespective of the t DMT received, whereas 7/9 clinicians reported observing WOE in their practice. 22/30 patients could differentiate WOE from relapse-related symptoms. Fatigue was the most common WOE symptom reported by patients (n=29/30) and clinicians (n=7/7) and was also the most bothersome symptom. Other common symptoms reported by patients were cognitive difficulties(28/30) and sensory dysfunction or numbness (20/30). In comparison, clinicians most often identified weakness, cognitive difficulties, or pain (n=5/7 each) as related to WOE. All patients reported WOE symptoms negatively impacted their daily activities. 25/30 patients discussed WOE symptoms with their neurologists; 15/25 patients perceived that the attention received was appropriate. Their primary coping mechanism recommended to patients included stress management, and prescription of medications. Clinical perspective on WOE varied describing it as psychosomatic manifestations, lack of efficacy or placebo effect.
Conclusion Perception and comprehension of the WOE differs between MS patients and clinicians indicating the need for effective health communication, and further work to elucidate the mechanisms of the WOE
