Initiating disease-modifying treatments in multiple sclerosis: Measuring the decision process using decisional...

Initiating disease-modifying treatments (DMTs) in multiple sclerosis (MS) is a major decision for people with (pw)MS but little is known about how the decision is perceived by the individual.

The aim of the study was to determine if decisional conflict (DC) and decisional regret reflect different stages of the decision-making process when initiating DMTs.

This was a cross-sectional study of three cohorts of pwMS (n = 254), a 'MS conference attendees', 'on treatment' and an 'offered treatment' cohort. Questionnaires assessing DC, decisional regret and control preference were performed.

Forty-four per cent (113/254) of pwMS were dissatisfied with their treatment status and 53% (135/254) had DC. DC (p = 0.013) and decisional regret (p = 0.027) increase in treatment-naïve pwMS and also in those 'offered treatment' dissatisfied with their treatment status (p < 0.0001), whilst those 'on treatment' have low Decisional Regret Scale (DRS) score (p = 0.0005). DC and DRS were only correlated with treatment status in those on treatment and not in treatment-naïve patients. F (58/135) pwMS satisfied with treatment had DC. DC (n = 236, adjusted R ² 0.137, p = 0.000) and DRS (n = 235, adjusted R ² 0.232, p = 0.000) were increased by dissatisfaction with treatment, lower potency treatment, being from the 'MS conference attendees' cohort and reliance on the doctor's decision, with DC additionally associated with being employed.

DC and decisional regret vary in populations at different stages of initiating DMTs and are impacted by non-treatment issues.