Despite medical advances, people with Progressive Multiple Sclerosis (pwPMS) continue to experience symptoms that cause poor quality of life and reduced wellbeing. These symptoms negatively affect their personal, social and professional lives, and the psychological wellbeing of their carers and/or family members.
This project was inspired by the day-to-day difficulties pwPMS and their families face because of the multitude of symptoms that disrupt patient lives, and an acknowledgement of the challenges we as a research and clinical community have faced to fully address these concerns. Rather than continue to pursue a research agenda that focuses on individual symptoms one at a time, we have listened to pwPMS and their desires, and have been ambitious in our goal: to develop and evaluate a new symptom management programme.
We are an experienced, multidisciplinary team of people with MS, neurologists, psychologists, nurses), occupational therapists, physiotherapists and physiology experts, rehabilitation medicine, health economists, and trial methodologists from 8 countries (Norway, USA, Belgium, Denmark, Italy, Canada, Australia, and UK) with a shared vision to improve the wellbeing of people with progressive MS.