Background: The validated physician-completed MSProDiscussTM tool facilitates physician-patient interaction in evaluating early signs of disease progression and the risk of transition from RRMS to SPMS. While evaluating MSProDiscuss, development of a patient-completed tool was a commonly received suggestion to monitor experiences of people with multiple sclerosis (pwMS) over time and facilitate discussions with healthcare professionals (HCPs).
Objectives: To develop a patient-based tool, Your MS Questionnaire, completed by pwMS, and evaluate its usability to help both pwMS and HCPs understand changes in MS-symptoms, disease progression, and their impact on daily activities.
Methods: Your MS Questionnaire is derived from MSProDiscuss, using input from pwMS, patient organizations and HCPs to include feedback from a broad range of the RRMS/SPMS patients. By means of 15 questions, it captures the individual perception of pwMS regarding changes in MS symptoms, disability progression and impact on daily living over the past 6 months. For testing of the questionnaire, two surveys (15 questions each) are being conducted among the treating neurologists initially after every consultation to understand patient-details, patient-satisfaction, HCP-satisfaction, and usability of MSProDiscuss, and again after up to 40 consultations (minimum 10 consultations required) capturing in-depth feedback on usefulness, integration in daily clinical routine in addition to MSProDiscuss, and improvement areas. PwMS were given the choice of electronic or paper version of the questionnaire.
Results: Usability testing of Your MS Questionnaire is currently ongoing across eight countries including the US, UK, Germany, Spain, Italy, Canada, Australia and China, permitting assessment of different aspects of the tools usability. Results will be presented at the meeting.
Conclusions: Your MS Questionnaire will facilitate the collection of real-world feedback from pwMS to help neurologists manage MS-disease activity and symptoms in daily-life. When completed before consultations, it may benefit pwMS and physicians through a better-structured conversation, including potential uses in telemedicine.