To survey the exchange of information and communication between patients and the treating clinical team, regarding decisions around disease modifying therapy (DMT) and MRI results.

The United Kingdom Multiple Sclerosis Register (UKMSR), contains an established, validated cohort of people with MS (PwMS). A strength of UKMSR is the level of responsiveness to questionnaire-based studies which makes it an ideal platform for collecting real world data.

An online questionnaire was designed to study the views of PwMS on their communication with the clinical team. We surveyed their involvement in the decision-making process when DMT was being considered, and what interest they had in viewing their MRI scans when attending clinic.

From 2512 responses, 44% were on DMT, and of these, 86% had relapsing MS. Of 1089 valid responses, 60% patients indicated that the decision to start DMT was shared, between them and the clinical team, whilst 13% responded it was “largely my teams’ decision”. Only 10% PwMS felt they received “too little information” when making DMT-related decisions.  In this cohort, 2459 patients had an MRI, with 70% having seen the MR images on at least one occasion. Majority of respondents who never had an MRI have secondary progressive MS. Nearly 90% of patients would be interested in seeing their MRI scans when attending clinic, but this was not found to be influenced by being on a DMT. However, 2/3 of those who were “not interested” in seeing their MRIs were not on DMT.

A majority of study participants reported adequate involvement and sharing of information in the decision-making process when starting DMT. Patients are very interested in viewing their MRI scans with a majority having had this opportunity. Not all patients however expressed an interest in seeing their MRI scans therefore patient preference needs to be considered in approaches to management.