Survey shows psychosocial impact of multiple sclerosis
By Kate Johnson
credit: AnnaStills/Getty Images
Symptoms of relapsing remitting multiple sclerosis (MS) significantly impact patients’ daily lives in a range of ways, from emotional, to cognitive, and social, according to results of the Global vsMS study which was published in the July/August issue of International Journal of MS Care.
The new findings show that “relationships and social aspects of life often suffer as a result of MS and, therefore, need to be considered when assessing a patient’s well-being,” wrote Barry A. Singer, MD, and coauthors.
“The results illuminate how deeply multiple sclerosis affects people’s physical, emotional, economic and social aspects of their lives,” Dr. Singer, director of the MS Center for Innovations in Care at Missouri Baptist Medical Center in St. Louis, said in an interview. “For example, 50% of respondents felt MS would not let them progress in their career. In addition, 26% of respondents with MS feared their partner may leave them, and 44% felt sexually less attractive due to MS.”
The 48-question survey, designed to assess the impact of MS on activities of daily living, emotional well-being, and relationships, was conducted online in July and August 2015 and included both MS patients and their care partners. Recruitment was through a Kantar Health opt-in email, coregistration with MySurvey.com and partners, e-newsletter campaigns, banner placements, and internal and external affiliate networks, the authors reported.
A total of 1,075 patient responses were included in the study, (responses from 580 of their care partners will be reported separately). More than half of respondents (56%) were from the United States, with others from Italy (11%), the United Kingdom (9%), Spain (7%), France (6%), Australia (5%), and Canada (5%).
Patients’ median age at symptom onset was 30 years, with time since diagnosis of 5-9 years for 25.6%, 10-14 years for 21.8%, less than 5 years for 21.8%, 15-21 years for 18.2%, and more than 21 years for 12.6%.
The survey revealed that almost 42% of patients reported a worsening in their ability to perform and manage daily activities in the past 2 years, with the most commonly reported reason being fatigue (in 75.5%), followed by weakness (68.3%), problems with balance/coordination (60.6%), heat/cold sensitivity (59.4%), memory problems (53.5%), numbness/tingling (53.0%), trouble concentrating (52.4%), trouble moving/muscle stiffness (51.9%), and trouble sleeping (51.4%).
Many participants also reported the psychosocial impact of their diagnosis, including negative impacts on their future outlook (48.5%), emotional well-being (43.5%), ability to cope with stress (39.3%), self-esteem (34.9%), and relationships with friends (25.1%) and family (15.9%). The authors added that fatigue and cognitive dysfunction, “are invisible symptoms of MS,” and when coupled with physical impairment “are likely to affect employment status.”
For health care providers, the results are “a launching point to improve the symptoms and well-being of our multiple sclerosis patients,” said Dr. Singer, adding that emotional and social factors should be routinely considered in addition to clinical relapse and disability when assessing the overall well-being of MS patients.
“Hidden symptoms” are often overlooked.
Revealing the hidden symptoms
Scott Newsome, DO, who was not involved with the research, said the study “highlights how primary symptoms significantly impact people living with MS including the often-overlooked hidden symptoms.”
“This study, amongst others, shows the importance of identifying the nonphysical aspects of MS,” said Dr. Newsome, an associate professor of neurology at Johns Hopkins University, Baltimore. “Importantly, many respondents’ in this study reported that there were multiple factors at play that resulted in negatively impacting their quality of life. Moreover, it was noted that there is a substantial trickle-down effect on individuals’ psychosocial health and well-being which needs attention.”
The vsMS survey was funded by Sanofi. Dr. Singer has received speaking and/or consulting fees from Acorda, Bayer, Biogen, EMD Serono, Genentech, Novartis, Sanofi Genzyme, and Teva and research support from Acorda, Alkermes, Biogen, MedImmune, Novartis, Roche, and Sanofi Genzyme. Dr. Newsome has received consultant fees from Biogen, Genentech, Celgene, EMD Serono, Greenwich Biosciences, Novartis, is an adviser for BioIncept and Autobahn, is a clinical adjudication committee member for a medDay Pharmaceuticals clinical trial, and has received research funding (paid directly to institution) from Biogen, Novartis, Genentech, the National Multiple Sclerosis Society, the Department of Defense, and the Patient-Centered Outcomes Research Institute.
Dr. Scott Newsome