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Loneliness and pessimism are associated with EDSS progression after stopping DMTs

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  • hscott72
    I'll bet the same trend holds in those who continue taking there DMTs. Believing you can do something makes you try and we can create new wiring in our brains despite the disease when we try. The creation of new pathways may be slower than the destruction in many of us but it still helps.

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  • Loneliness and pessimism are associated with EDSS progression after stopping DMTs

    From ECTRIMS 2018

    Patient-reported loneliness and pessimism are associated with EDSS progression after discontinuation of disease modifying therapies in multiple sclerosis

    C. Vaughn, K. Kavak, B. Weinstock-Guttman University at Buffalo, New York State Multiple Sclerosis Consortium, Buffalo, NY, United States

    Background: The large armamentarium of disease modifying therapies (DMTs) available to treat multiple sclerosis (MS) has contributed to more stable disease. However, there is insufficient data available to determine whether DMTs should be discontinued in persons with MS (pwMS) with an apparently stable disease course.

    Objective: To examine whether any clinical or patient-reported outcomes (PROs) were associated with time to disability progression after DMT discontinuation.

    Methods: Participants who discontinued DMT, did not resume treatment, and had at least three follow-ups, were extracted from the New York State Multiple Sclerosis Consortium (NYSMSC). A change in Kurtzke Expanded Disability Status Scale (EDSS) score of ≥1.0 points, if baseline EDSS < 6.0, or of ≥0.5 points, if baseline EDSS ≥6.0, constituted disability worsening. Time to event was defined as the duration in months between study enrollment and disability worsening, or date of most recent follow-up in case EDSS scores remained stable. Mobility, physical and psychosocial limitations were assessed the follow-up before treatment discontinuation using the LIFEware™ system. Kaplan-Meier survival curves and log-rank statistics were assessed to determine differences between patient-reported outcomes (PROs) or other clinical outcomes before DMT discontinuation and time to disability progression. These analyses were followed by Cox proportional hazards modeling to adjust for age at DMT discontinuation and EDSS before DMT discontinuation.

    Results: A final sample of 96 participants were included in this analysis. Mean age at DMT discontinuation was 49.6 (SD=12.6) years and mean disease duration was 16.0 (11.0) years. During the study (mean of 6.1 years ±3.4 years), 24 patients progressed in EDSS scores and 72 remained stable. Participants who reported moderate to severe loneliness and pessimism before discontinuing DMT were more likely to reach EDSS progression sooner than participants who reported no or mild loneliness and pessimism (Adjusted Hazards Ratio for loneliness = 3.00, 95% CI: 1.22-7.35 and Adjusted Hazards Ratio for pessimism = 3.31, 95% CI: 1.27-8.61).

    Conclusion: Participants who reported loneliness and pessimism before DMT discontinuation were more likely to reach EDSS progression sooner after DMT discontinuation. This suggests that psychosocial PROs, and symptomatic treatment, should be taken into consideration when patients and clinicians are contemplating DMT discontinuation.