Fatigue in Active and Nonactive Primary and Secondary Progressive Multiple Sclerosis Patients in the United States

Background: Although fatigue is one of the most common symptoms of multiple sclerosis (MS), its prevalence isn’t well documented, especially in patients with active and nonactive primary and secondary progressive MS (PPMS and SPMS).

Objectives: To determine what percentage of patients with active and nonactive PPMS and SPMS are impacted by fatigue in the US.

Methods: Adelphi Disease Specific Programme is a US cross-sectional survey which has been conducted from 2013-2021. Physicians who participated report on patients’ clinical status which included an assessment of symptoms, including fatigue. In the 2021 data, fatigue was broken out into physical and mental fatigue categories and were reported by physicians. Physicians also reported on each patient’s requirement for assistance with daily needs. Patients were classified as either active or nonactive within both subtypes of progressive MS.

Results: A total of 2528 PPMS (851 active, 1677 nonactive) and 779 SPMS (293 active, and 486 nonactive) patients were evaluated. The average age of active and nonactive PPMS and SPMS patients was 49-54 years. Nonactive PPMS were the least likely to be treated (59%) and active SPMS the most likely to be treated (89%) with a disease-modifying therapy (DMT). The percentage of SPMS patients who were female was 68%-70% while 52%-57% of the PPMS patients were female. While only 20-28% of SPMS and PPMS patients reported fatigue as a symptom of the first consultation, the majority (52-63%) of patients reported fatigue as part of their current symptoms. Of the patients who currently had fatigue, 35%-44% reported moderate to severe fatigue across active and nonactive PPMS and SPMS. In 2021, the majority (52-67%) of patients experienced physical fatigue: 67% of active PPMS and 52% of nonactive PPMS; 63% of active SPMS and 60% of nonactive SPMS. Mental fatigue was reported in 38%- 53% of patients: 53% of active PPMS and 39% of nonactive PPMS; 48% of active SPMS and 38% of nonactive SPMS. Almost half (45-49%) of active and nonactive PPMS and SPMS patients needed a caregiver for daily needs.

Conclusions: Most patients are on a DMT but continue to be impacted by fatigue, regardless of active or nonactive status, with no major difference between PPMS and SPMS. Prevalence of fatigue increases in parallel with disease duration. Almost half of patients need assistance to do daily activities. More transformational treatments are needed to address fatigue in progressive MS patients.