Kathleen M Zackowski1, Jennifer Freeman2, Giampaolo Brichetto3, Diego Centonze4, Ulrik Dalgas5, John DeLuca6, Dawn Ehde7, Sara Elgott8, Vanessa Fanning9, Peter Feys10, Marcia Finlayson11, Stefan M Gold12, Matilde Inglese13, Ruth Ann Marrie14, Michelle Ploughman15, Christine N Sang16, Jaume Sastre-Garriga17, Caroline Sincock18, Jonathan Strum19, Johan van Beek20, Anthony Feinstein21. 1. National MS Society, New York, NY, USA. 2. School of Health Professions, University of Plymouth, Plymouth UK. 3. Research in Rehabilitation, Italian MS Society and Foundation, Milan, Italy. 4. Department of Medicine, University of Rome Tor Vergata, Rome, Italy. 5. Department of Public Health, Aarhus University, Aarhus, Denmark. 6. Department of Research, Kessler Foundation, West Orange, NJ, USA. 7. Department of Rehabilitation Medicine, University of Washington Medicine, Seattle, WA, USA. 8. Global Director of Patient Affairs, MedDay Pharmaceuticals, Maidenhead, UK. 9. People Affected by MS Committee, International Progressive MS Alliance, Canberra, ACT, Australia. 10. Department of Rehabilitation Sciences and Physiotherapy, Universiteit Hasselt, Hasselt, Belgium. 11. School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada. 12. Department of Neuropsychiatry, Charitè-University of Medicine Berlin, Berlin, Germany. 13. Department of Neurology, Radiology and Neuroscience, Icahn School of Medicine at Mount Sinai, New York, NY, USA. 14. Departments of Internal Medicine and Community Health Sciences, University of Manitoba, Winnipeg, MB, Canada. 15. Department of Physical Medicine and Rehabilitation, Memorial University of Newfoundland, St. Johns, NL, Canada. 16. Department of Anesthesiology, Critical Care and Pain Medicine, Harvard Medical School, Boston, MA, USA. 17. Staff Neurologist, Vall d'Hebron University Hospital, Barcelona, Spain. 18. Scientific Steering Committee, International Progressive MS Alliance, Glasgow, UK. 19. Scientific Steering Committee, International Progressive MS Alliance, Long Beach, CA, USA. 20. Global International Scientific Director, Neuroimmunology, F. Hoffmann-La Roche, Ltd., Basel, Switzerland. 21. Department of Psychiatry, University of Toronto and Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
Abstract
BACKGROUND: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. OBJECTIVE: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. METHODS: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. RESULTS: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. CONCLUSIONS: This coordinated call to action-to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them-is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.
BACKGROUND:People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. OBJECTIVE: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. METHODS: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. RESULTS: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. CONCLUSIONS: This coordinated call to action-to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them-is an important step in addressing gaps in rehabilitation research for people affected by progressive MS.
Authors: Alan J Thompson; William Carroll; Olga Ciccarelli; Giancarlo Comi; Anne Cross; Alexis Donnelly; Anthony Feinstein; Robert J Fox; Anne Helme; Reinhard Hohlfeld; Robert Hyde; Pamela Kanellis; Douglas Landsman; Catherine Lubetzki; Ruth Ann Marrie; Julia Morahan; Xavier Montalban; Bruno Musch; Sarah Rawlings; Marco Salvetti; Finn Sellebjerg; Caroline Sincock; Kathryn E Smith; Jon Strum; Paola Zaratin; Timothy Coetzee Journal: Mult Scler Date: 2021-12-01 Impact factor: 6.312
Authors: Anthony Feinstein; Maria Pia Amato; Giampaolo Brichetto; Jeremy Chataway; Nancy D Chiaravalloti; Gary Cutter; Ulrik Dalgas; John DeLuca; Rachel Farrell; Peter Feys; Massimo Filippi; Jennifer Freeman; Matilde Inglese; Cecilia Meza; Rob Motl; Maria Assunta Rocca; Brian M Sandroff; Amber Salter Journal: J Neurol Date: 2021-11-05 Impact factor: 6.682
Authors: Parnian Shobeiri; Amirali Karimi; Sara Momtazmanesh; Antônio L Teixeira; Charlotte E Teunissen; Erwin E H van Wegen; Mark A Hirsch; Mir Saeed Yekaninejad; Nima Rezaei Journal: PLoS One Date: 2022-03-03 Impact factor: 3.240