DXM01
Development and Usability Testing of a Patient-Based Digital Tool to Detect Early Signs of Changes in Multiple Sclerosis Symptoms and Progression: Your MS Questionnaire

Tuesday, October 26, 2021: 2:45 PM
Butler (Rosen Shingle Creek)
Tjalf Ziemssen, MD, PhD , Department of Neurology, University Clinic Carl-Gustav Carus, Dresden, Germany
Enrique Alvarez, MD, PhD , University of Colorado School of Medicine, Aurora, CO
Virender Bhan, MD , University of British Columbia, Vancouver, BC, Canada
Jason Burton, MBBS , Centre for Neuromuscular and Neurological Disorders, Western Australian Neuroscience Research Institute, The University of Western Australia, Perth, Australia
Olaf Hoffmann, PD Dr. med. , Department of Neurology, Alexianer St. Josefs Hospital, Potsdam, Germany
Celia Oreja-Guevara, MD , Department of Neurology, University Hospital San Carlos, Idissc, Madrid, Spain
René Robles-Cedeño, MD, PhD , Neuroimmonology and Multiple Sclerosis Unit, Girona, Spain
Maria Trojano, MD , University of Bari, Bari, Italy
Patrick Vermersch, MD, PhD , Univ. Lille, Inserm U1172, CHU Lille, FHU Precise, Lille, France
Salvatore Napoli, MD , Partners, Multiple Sclerosis Center, and Center for Neurological Imaging, Department of Neurology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA
Augusto Miravalle, MD , Department of Neurology, University of Colorado, Denver, CO
Yan Xu, MD, PhD , Multiple Sclerosis Center, Department of Neurology, Peking Union Medical College Hospital, Peking Union Medical College, Chinese Academy of Medical Sciences, Beijing, China
Jo Vandercappellen, PhD, MBA , Novartis Pharma AG, Basel, Switzerland
Mudeer Khwaja, BSc , Novartis Pharma AG, Basel, Switzerland
Mark Marchaterre, IT BS , Novartis Services Inc., East Hanover, East Hanover, NJ
Bianca Stadler, PhD , Novartis Pharma GmbH, NÜRNBERG, Germany
Thomas Hach, MD , Novartis Pharma AG, Basel, Switzerland
Gavin Giovannoni, MD, PhD , Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, United Kingdom



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 tool’s 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.

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