#MSVirtual2020 – Fatigue Tops Survey About Relapsing MS Symptoms

Fatigue is the most impactful symptom on daily functioning in people with relapsing forms of multiple sclerosis (MS) and is more severe in patients with relapse, pain, depression, and sleep disorders, according to a U.S.-based survey.

The results were based mostly on a new MS-specific tool called the Fatigue Symptoms and Impacts Questionnaire-Relapsing Multiple Sclerosis (FSIQ-RMS), supporting its use to further understand and manage this debilitating symptom.

The findings were presented recently by Lindsey Lair, MD, the senior director and senior global medical affairs leader of Janssen Pharmaceuticals’ neurology at MSVirtual2020, the 8th joint meeting of the American (ACTRIMS) and European (ECTRIMS) Committees for Treatment and Research in MS, held Sept. 11–13.

Lair’s poster presentation was titled “A Real-World Study Characterizing Symptoms and Impacts of Fatigue in U.S. Adults with Relapsing Multiple Sclerosis Using a Novel Disease Specific Scale.”

“At Janssen, we approach neurodegenerative conditions holistically, considering both fundamental and secondary – or ‘hidden’ – symptoms,”  Bill Martin, PhD, global therapeutic head of neuroscience at Janssen Research & Development, said in a press release.

“As such, we developed the FSIQ-RMS to better understand and measure the severity of MS-related fatigue and its impact on daily function, so that these insights can be applied to develop meaningful therapeutic options, as well as educational initiatives to help people with MS, and their healthcare team, better manage this prominent symptom,” Martin said.

The 20-item FSIQ-RMS is a new patient-reported outcome measure designed to assess fatigue symptoms and their severity in relapsing MS patients and the impact on physical activity, cognitive and emotional function, and coping mechanisms. Fatigue severity is based on the mean of daily ratings over seven days.

According to Janssen, FSIQ-RMS was developed using methods consistent with U.S. Food & Drug Administration guidelines.

Results showed that more than 65% of MS patients experience fatigue on a daily basis, with 60% reporting it has worsened since diagnosis.

MS-related fatigue also was associated with feelings of being misunderstood and loneliness.

While more than 90% of MS patients discussed fatigue with their healthcare provider, more than half (56%) felt its overall impact in their daily lives was not fully understood. Similar feelings were reported toward people in their lives, with more than 75% of survey respondents agreeing it is difficult for others to fully understand fatigue’s impact.

Nearly 70% of patients felt they should hide their fatigue from others. More than 40% reported feeling lonely due to their fatigue and more than one third (37%)  cited difficulties in making new friends or the existence of damaged friendships because of fatigue.

Nearly half of the survey respondents took breaks throughout the day to manage their fatigue, with more than one third reporting either arriving late or leaving work early, calling in sick (from work), or missing family or social activities due to fatigue.

For those who were actively working, 85% stated that fatigue affected how they felt and acted at work.

Overall, the survey findings highlight that fatigue is a very common MS symptom and that it negatively affects the emotional, social, and work aspects of patients’ lives.