What Matters in MS - a Quantitative Survey of People Living with MS

Background: While MS has an increasingly debilitating impact on mobility over time, numerous concomitant symptoms also burden patients with MS, from depression and cognitive issues to fatigue.  The total impact of these symptoms and progression can lead to significant changes in lifestyle, including early retirement, social withdrawal, and lack of activity that can make living with MS even more profoundly debilitating. There is scant research on how people describe disability progression, how they deal with it and what trade-offs they make in seeking treatment.

Objectives: To better understand what symptoms are experienced, the impact of MS and treatment decisions made to minimize MS’s impact, a quantitative patient study was undertaken that specifically addressed:

• Impact of MS on day-to-day life
• Self-reported symptoms of MS
• Description of disability progression
• Trade-offs when deciding what DMTs to take
• What health care providers should know to better manage MS

Methods: In November 2014, an email invitation was sent to the entire MyMSTeam community, a social network of ~ 25,000 people (currently > 60,000 people), diagnosed with MS.  From Nov 2^nd to Nov 29^th, a total of 1,107 members responded to a 17 question survey.

Results: Research highlights the far-reaching impact MS has on quality of life.  Symptoms experienced most often included fatigue (82%), lack of mobility/walking (64%), balance (64%), weakness (55%), cognition (48%) and depression (35%).  Respondents define “disability progression” as increasing limitations in their ability to get around (42%), losing a normal life such as caring for children, doing everyday chores, pursuing hobbies (25%), and losing one’s independence (22%.   For decisions on new treatment, the doctor’s recommendation was paramount (47%), and DMT efficacy (18%) and route of administration (17%, with orals being the preferred vehicle) were also critical factors.  DMT efficacy assessment was multi-faceted and includes ability to slow progression (49%), prevent further physical disability (42%), prevent new lesions (40%) and improve quality of life (40%).

Conclusions: Understanding the range of symptoms and the impact in totality will better allow medical professionals to treat the individual holistically, and not just the disease itself.  Additionally, helping patients understand MS progression will allow specialists to set realistic expectations for treating the disease and to help their patients better prepare for the future.