#MSVirtual2020 – Fatigue Tops Survey About Relapsing MS Symptoms

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by Marta Figueiredo, PhD |

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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.

The presented data were part of an ongoing non-interventional prospective study of adults with relapsing forms of MS who are able to walk; respondents were recruited across the U.S. via an online questionnaire.

A total of 200 patients, with a mean age of 43.4 years, completed demographic and clinical questionnaires, including the FSIQ-RMS, administered daily for seven days, via an online patient platform called Carenity. Most respondents were women (88.5%) and had relapsing-remitting MS (96.5%).

Results showed that the majority of patients experienced daily fatigue and more than half (55.3%) did so before being diagnosed with MS.

The most commonly reported triggering factors for fatigue were heat exposure (83.5%) and stress (76.6%), followed by poor sleep (61.5%).

In addition, fatigue was rated as the most impactful MS-related symptom on daily functioning (by 33% of the participants), followed by walking difficulties (25%). Patients with lower disability were more likely to report fatigue as the most impactful factor on daily functioning.

Nearly half (46%) of respondents stated they have taken time off from work due to their fatigue, “with most patients taking one to five days off,” Lair said during the presentation.

She also noted that patients reported “high levels of fatigue and associated impacts” on physical activity, cognitive and emotional function, and coping mechanisms at enrollment, as assessed by the FSIQ-RMS.

Notably, fatigue levels were significantly higher in patients with self-reported relapse, pain, depression, and/or sleep disorders than in those without these features.

No significant differences in fatigue severity were found based on disease duration (less or more than five years) or type of disease-modifying therapy (high- or low-to-moderate-efficacy).

“MS fatigue occurs daily, and influences day to day functioning for most with relapsing MS,” Lair concluded, adding that “the FSIQ-RMS is a novel MS-specific assessment that can advance the understanding and management of fatigue.”

In the same press release, Janssen announced the results of an international survey, conducted in partnership with the National Multiple Sclerosis Society, which assessed the occurrence of fatigue in MS patients and its daily-life impact.

The study involved 1,300 adults with MS living in the U.S., Canada, U.K., Germany, France, and Italy.

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.

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