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.