The aim of this study was to assess long-term prognosis (LTP) communication preferences and factors associated in early-stage relapsing-remitting multiple sclerosis (RRMS) patients.

Multiple sclerosis is one of the most common causes of neurological disability in young adults. Improving communication strategies on prognosis may help patients deal with the disease and adjust their life goals. However, there is limited information on patients’ preferences regarding the LTP communication.

A multicenter, non-interventional study was conducted. Adult patients with RRMS diagnosis, disease duration ≤3 years, and Expanded Disability Status Scale (EDSS) score of 0-5.5 were included. The Prognosis in MS questionnaire was used to assess how much patients want to know about their LTP. Patient-reported measures were administered to gather information on pain, fatigue, mood, anxiety, quality of life, stigma, feeling of hopelessness, and coping strategies. Cognition was assessed using the Symbol Digit Modalities Test (SDMT). A multivariate logistic regression analysis was performed to assess the association between LTP information preference and demographic, clinical characteristics, and patients’ perspectives.

A total of 189 patients were included (mean age: 36.1 ± 9.4 years, 71.4% female, mean disease duration: 1.2 ± 0.8 years). Median EDSS score was 1.0 (IQR=0.0-2.0). 68.5% (n=126/184) of patients had never discussed LTP with their neurologists, whereas 69.3% (n=126/182) reported interest in knowing about it (73.5% at diagnosis). Bivariate analyses suggested that patients were significantly more likely to have higher LTP information preferences if they were male and had a lower SDMT score, and a tendency was observed in those with lower perception of pain. Male gender and a lower SDMT score were predictors of LTP information preferences (OR=0.264; 95% CI: 0.09-0.64, p=0.006; OR=2.059; 95% CI: 1.02-4.32, p=0.049, respectively).

Patients with RRMS prefer to discuss LTP with their neurologists. Understanding factors involved may be useful to implement individualized communication strategies.