Risk tolerance to MS therapies: Survey results from the NARCOMS registry

Abstract

Background: There is little information about risk acceptance of multiple sclerosis (MS) patients to various MS therapies.

Objective: To determine MS patients׳ tolerance to risky therapies and identify associated characteristics.

Methods: MS patients from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry׳s online cohort were invited to complete questionnaires on decision making and risk tolerance (RT) to two therapeutic scenarios: a theoretical cure for MS [CureMS], with permanent reversal of all MS symptoms but a risk of immediate painless death; and natalizumab [NAT], a real-life scenario with benefits and risks as defined by Phase III trial results.

Results: The median RT for both scenarios was 1:10,000; 15-23% of respondents were not willing to take any risk for their MS therapy. Participants with greater disability or not taking any MS therapy showed a greater RT, while females and those caring for dependents had a lower RT. Females and older age were predictors of lower RT, while increasing disability and greater blunting attitude with respect to information seeking behavior were predictors of higher RT.

Conclusion: MS patients displayed a wide range of RT for MS therapies. Our study identified gender, age, disability and information seeking behavior to be associated with RT.

Keywords: Decision making; Disease modifying therapy; Information seeking behavior; Multiple sclerosis; NARCOMS registry; Risk tolerance.