Do people with multiple sclerosis want to discuss their long-term prognosis? A nationwide study in Argentina

Abstract

Background: Demographics, clinical and imaging prognostic factors have been reported in large series of people with multiple sclerosis (PwMS). However, personalized long-term prognosis (LTP) is varied and uncertain in each particular case. Currently, there is limited evidence on how PwMS feel about prognosis communication and their coping strategies. Therefore, we aimed to assess the prognosis communication experiences and preferences of PwMS. In addition, we investigated whether demographic, clinical and neuropsychological factors are associated with prognosis information preferences.

Methods: A cross-sectional online survey that included 301 PwMS from Argentina was carried out. Data on self-administered surveys including prognosis in MS questionnaire (PIMS study, evaluating prognosis communication experiences, attitudes and preferences), MS impact scale (MSIS-29), Brief Coping Orientation to Problems Experienced (COPE-28) inventory, Fatigue Severity Scale and Expanded Disability Status Scale (EDSS) were evaluated. A logistic regression model was performed.

Results: 21.5% of responders never had discussed LTP with their neurologist and 47.1% lacked clarity about their LTP. PwMS had similar preference for LTP information at diagnosis, survey (current) or in the future (72.4%, 71.7%, 73.4%, respectively). Most participants (94.3%) wanted to be informed about LTP tool availability, and 61.7% wanted to know more about conversion to SPMS. Older age (p = 0.03) and lower fatigue (p = 0.04), and COPE denial (p < 0.01), humour (p = 0.03), self-blame (p < 0.01) and venting (p = 0.02) were associated with lower LTP information preference. Trends were observed for higher MS duration (p = 0.06), physical (p = 0.07) and psychological (p = 0.08) impact. Fatigue and COPE denial were predictors of higher LTP information preference in a multivariate model.

Conclusion: PwMS from Argentina want more discussion and clarification about their LTP. Several physical and neuropsychological factors predict LTP information preference.

Keywords: Coping; Impact of multiple sclerosis; Latin American; Long-term prognosis; Multiple sclerosis.