The psychosocial and cognitive impact of longstanding benign MS
UBC researchers and UBC MS clinic neurologists compared outcomes in people with benign MS (EDSS<3.0 at 20 years disease duration) to ‘no longer benign’ (those who had run a benign course and later developed disability with EDSS > 3.0) and found that depression and mental health quality of life differed little between the two groups. However, people with longstanding 'benign' MS (EDSS ≤3 for 25+ years) had less fatigue, better physical quality of life and employment outcomes, and infrequent cognitive impairment compared with those who later progressed to ‘no longer benign’ after an initially benign course. [Ana-Luiza Sayao, MD, Anna-Marie Bueno, B.Sc., Virginia Devonshire, MD, the UBC MS Clinic Neurologists*and Helen Tremlett, PhD]
UBC researchers and clinicians re-assessed 61 participants 30 years after initial MS-onset. Thirty-six participants remained benign at re-assessment and 25 had progressed to ‘no longer benign’ MS despite being considered benign at ten and 20 years of disease duration. The benign and ‘no longer benign’ groups were compared on essential characteristics such as gender, age, disease course and onset symptoms, as well as depression, fatigue, health-related quality of life, cognition, and employment status.
Those with ‘no longer benign’ MS were more likely to have fatigue, poorer physical functioning, negative change in employment status, and cognitive impairment. There were no significant differences between the benign and ‘no longer benign’ groups in depression and mental health quality of life assessments.
Benign MS is typically defined using the Expanded Disability Status Scale (EDSS) and relies heavily on ambulation. However, findings from this study demonstrate that overall health-related quality of life assessments of participants may not correlate with the EDSS score determined by their neurologist. Remaining benign over the long term appeared to carry some advantages beyond ambulation and may have a limited prognostic value, given that a significant number of people with benign MS will progress in disability over time.