PO07
Perceptions of Multiple Sclerosis in 2015: A Public Disease-Awareness Survey

Thursday, June 2, 2016
Exhibit Hall
Doug Taylor, BSc , Institute for Evidence Based Medicine, New Hope, PA
Nipa Patel, BA , The Medicine Group, New Hope, PA
Philip Sjostedt, BPharm , The Medicine Group, New Hope, PA
Nipa Patel, BA , The Medicine Group, New Hope, PA
PDF


Background:

Despite advances in diagnosis, prognosis, treatment, and guidelines, many people remain ignorant of the real-world realities of multiple sclerosis (MS). Patients are often reluctant to discuss their disease with family and friends and scientific advances in MS are rarely discussed outside the medical field. Public surveys of MS provide physicians, patient groups, and industry stakeholders will valuable insights into how the disease is perceived in 2015.

Objectives:

Public perceptions of the impact of MS on patients’ quality of life, family, employment, and economic outlook are explored in this survey. The survey also seeks to determine the public’s knowledge of MS as a medical condition and a factor in daily life.

Methods:

A virtual survey of 350 respondents from all educational levels and socioeconomic backgrounds was conducted in December 2015. Respondents were polled on their knowledge of MS, including familiarity with the disease, which symptoms they believed were associated with MS, diagnosis and treatment options, quality-of-life impact, and ways to learn new information about MS.

Results:

A total of 306 respondents (female, 55%, n=169) completed the survey though not all respondents answered every question; 44% reported knowing someone with MS, with more than half (152 of 278, 54%) considering themselves somewhat familiar with the disease. Respondents reported their knowledge of symptoms, their beliefs on the role of MS in daily life, and how impactful they considered the disease for patients. A majority (174 of 278, 63%) believed MS worsens patients’ relationships with their families; 77% (214 of 278) of respondents believed MS makes work difficult for patients; and 73% (202 of 278) of respondents considered walking/mobility problems to be the most debilitating factor of MS. Furthermore, 86% (239 of 278) of respondents were unaware of any treatments for MS and 58.6% (163 of 278) of respondents believed the disease to be fatal.

Conclusions:

Public perceptions of MS are fair, with general understanding of the symptoms associated with the disease and accurate descriptions of how MS can impact patients’ lives. Large gaps remain, however, in public understanding, particularly with regard to knowledge of symptomatology, available treatments, impact on family life, and cost.