Multiple Sclerosis: What Are People With MS and Their Health Care Providers Really Thinking?

ROCKLAND, Mass. and NEW YORK — The National Multiple Sclerosis (MS) Society, in collaboration with EMD Serono, today released findings from a nationwide GfK Roper survey, “MS Viewpoints: Understanding the Outlook on Emerging Therapies” in conjunction with the first-ever World MS Day.

The MS Viewpoints survey compared the perspectives of neurologists, MS nurses and other healthcare professionals (HCPs)* and people living with MS on treatments, psychosocial burdens of the disease, and delays in starting treatment. Results from the survey uncovered that people newly diagnosed with MS often delay starting treatment, citing fear or anxiety about current treatment options as a key reason.

“At the National MS Society, we stress the importance of early treatment. It’s critical for physicians and people living with MS to sit down early and have a candid conversation about an individual’s concerns, fears and options for treatment,” said Dr. Nicholas LaRocca, vice president, health care delivery and policy research, National MS Society. “World MS Day provides an opportunity to unite internationally and raise global awareness of MS and its impact on people living with the disease starting at diagnosis.”

Results from the survey revealed that nearly 20% of people living with MS reported delaying the start of treatment for a variety of reasons, including fear or anxiety over treatment. Differences emerged between physicians and people living with MS about how much this fear affects their lives. In the survey, the majority of physicians, and MS nurses and other HCPs reported that anxiety around treatment impacts people living with MS “a great deal” or “somewhat” compared to less than half of those living with the disease who expressed such views.

“Patient and physician dialogue has come a long way in recent years, but there is still work to be done,” said Harold Moses Jr., MD, assistant professor of Neurology at Vanderbilt University. “As new therapies are approved and enter the market, we expect to see more discussion about whether these options are right for patients. In fact, the entire patient/physician dialogue may start to shift.”

The MS Viewpoints survey uncovered that while individuals currently on treatment report being generally satisfied with their treatment, nearly one-third (33%) of people living with MS reported that their current MS treatment interferes with their quality of life and daily activities such as work/career, exercise routine and sleeping habits, topics that are more likely to be discussed by their MS nurse or other HCP than by their physician.

“The dialogue between a person living with MS and a nurse or other healthcare provider is important because it often focuses on the impact of MS on day-to-day activities,” said Amy Perrin-Ross, APN, MSN, CNRN, MSCN, neuroscience program coordinator, Loyola University Chicago, and president of the International Organization of Multiple Sclerosis Nurses (IOMSN). “Perhaps this is why the survey showed that nurses and other HCPs were more likely than physicians to believe people with MS who initially delayed starting their prescribed MS therapy would have instead started therapy more quickly if an oral medication had been available.”

About the Survey

Independent research group, GfK Roper Public Affairs & Media, conducted the survey, interviewing 250 neurologists, 250 MS nurses and other HCPs, and 250 people living with relapsing MS. Interviews focused on understanding and comparing views of the current treatment landscape and the potential impact of emerging therapies, and also explored some of the psycho-social barriers that people living with MS face on a daily basis.

The survey was conducted via phone in the United States (US) by GfK Roper on behalf of the National MS Society in collaboration with EMD Serono between November 2008 and February 2009. The survey looked at neurologists (n=250), MS nurses and other HCPs (n=250) and people with relapsing MS (n=250). Following their survey, physicians were asked to recruit people with MS. Survey length averaged 19 minutes for neurologists and nurses and other HCPs, and 24 minutes for people living with MS. Statistical testing was done at a 95% confidence interval. A full methodology is available upon request.

About Multiple Sclerosis

Multiple sclerosis (MS) is a chronic, progressive disease of the central nervous system (CNS) that affects approximately 400,000 Americans and as many as 2.1 million individuals worldwide. While symptoms can vary, the most common symptoms of MS include blurred vision, fatigue, numbness or tingling in the limbs and problems with strength and coordination. The relapsing forms of MS are the most common.

About the National MS Society

The National MS Society addresses the challenges of each person affected by MS through funding cutting-edge research, driving change through advocacy, facilitating professional education, collaborating with MS organizations around the world, and providing programs and services designed to help people with MS and their families move their lives forward. In 2008 alone, through the national office and its 500-state network of chapters, the Society devoted over $136 million to programs that enhanced more than one million lives. The Society also invested nearly $50 million to support 440 research projects around the world. The Society is dedicated to achieving a world free of MS. Join the movement at:

About World MS Day

The first World MS Day will be observed on Wednesday, May 27, 2009 and on the last Wednesday of every May in the future. World MS Day has been established to raise awareness of MS and the importance of the global MS movement, encourage enhanced international collaboration to move us closer to a world free of multiple sclerosis, and generate additional funds to support the global MS movement. There are many ways to take action on World MS Day. Register to be part of the global movement by visiting, and make your voice heard in your local community by visiting

About EMD Serono

EMD Serono, Inc., an affiliate of Merck KGaA, Darmstadt, Germany, is a leader in the US biopharmaceutical arena, integrating cutting-edge science with unparalleled patient support systems to improve people’s lives. The company has strong market positions in neurodegenerative diseases, with Rebif(R) (interferon beta-1a), as well as in endocrinology, with Saizen(R) (somatropin (rDNA origin) for injection), Serostim(R) (somatropin (rDNA origin) for injection) and Zorbtive(TM) (somatropin (rDNA origin) for injection). EMD Serono is a leader in fertility treatments, with Gonal-f(R) (follitropin alpha for injection), Luveris(R) (lutropin alfa for injection) and Ovidrel(R) Prefilled Syringe (choriogonadotropin alpha injection). With a clear focus on the patient and a leadership presence in the biopharmaceutical industry, EMD Serono’s US footprint continues to grow, with more than 1000 employees around the country and fully integrated commercial, clinical and research operations in the company’s home state of Massachusetts. For more information, please visit

About GfK Roper

GfK Roper Public Affairs & Media is a division of GfK Custom Research North America specializing in customized public opinion polling, media & communications research, and corporate reputation measurement – in the US and globally. In addition to delivering a broad range of customized research studies, GfK Roper Public Affairs & Media draws from GfK’s syndicated consumer tracking services, GfK Roper Reports(R) US and GfK Roper Reports(R) Worldwide, which monitor consumer values, beliefs, attitudes and behaviors in the US and more than 25 other countries. Headquartered in New York, GfK Custom Research North America is part of the GfK Group. With home offices in Nuremburg, Germany, the GfK Group is the No. 4 market research organization worldwide. Its activities cover three business sectors: Custom Research, Retail and Technology, and Media. The Group has more than 115 companies covering 100 countries. For further information, visit:

*Nursing and other HCPs survey participants included: registered nurses, certified medical assistants, licensed practical nurses, nurse practitioners, physicians’ assistants and certified nurse specialists