New findings from an international survey of people living with multiple sclerosis (MS) and neurologists show that multiple factors in the patient-physician dynamic contribute to overall patient treatment satisfaction, including patients’ treatment expectations, degree of input into the treatment decision-making process and communication with their physicians. The results reinforce the significance of a strong patient-physician collaboration and reveal opportunities for improving MS patient care. These data are being presented at the 67th American Academy of Neurology’s (AAN) Annual Meeting in Washington, DC.
“Treatment satisfaction depends on many factors and as neurologists, we should strive to better understand all aspects that affect a patient’s overall experience. These data highlight an opportunity to improve satisfaction through increased patient involvement in the decision-making process and communication with their neurologist,” said Sibyl Wray, M.D., director, Hope Neurology MS Center, Knoxville, Tenn., U.S. “Establishing a patient-physician partnership that outlines clear treatment goals and expectations and allows for shared responsibility in treatment decision-making could contribute to better care.”
The survey was developed in partnership with the State of MS Consortium, an international steering committee of treating neurologists from five countries and representatives from patient advocacy groups, commissioned by Biogen (BIIB) and conducted online by Harris Poll. The survey involved MS patients and neurologists who treat the disease in Germany, Italy, Spain, the United Kingdom (UK) and the United States (U.S.) and aimed to understand the current experiences of those living with and treating the disease, including treatment expectations, decisions and satisfaction.
Based on the survey, MS patients are divided when it comes to satisfaction with their current disease-modifying treatment (DMT)—58 percent report being “very satisfied/satisfied,” while 42 percent are “somewhat/not at all satisfied.” As might be expected, patients who are more satisfied with their DMT are more likely than those who are not to report that their expectations set forth prior to starting treatment were met closely or very closely. In fact, 67 percent of these very satisfied/satisfied patients report having their expectations met. However, of the 42 percent of patients who are somewhat/not at all satisfied with their treatment, 44 percent report having their expectations met. Satisfied patients also tend to play active roles in the treatment decision-making process and feel comfortable speaking with their physicians.
Patients Satisfied with Therapy Provide Input into Their Treatment Plan and Cite Comfort Speaking with Their Neurologist
The survey reveals a strong relationship between a collaborative approach to therapy decisions and treatment satisfaction, finding that patients who are very satisfied or satisfied with their DMT generally have more input into their treatment plan. Of the patients who are satisfied with their therapy, 69 percent characterize themselves as an equal partner or the primary/sole decision-maker in choosing their DMT. Interestingly, nearly all neurologists agree it is important for MS patients to provide input when choosing their treatment plan (97 percent) and recognize that patients who are more involved in the decision-making process tend to be more satisfied with their experience (92 percent).
In addition to their degree of input in treatment decisions, patients who are very satisfied or satisfied with their DMT are more likely than those who are not to say that they are very comfortable speaking to their neurologist about their MS. Of the patients who are satisfied with their DMT, 64 percent say they are very comfortable speaking with their neurologist. Conversely, of the patients who are less satisfied with their DMT, only 43 percent report being very comfortable speaking with their neurologist.
Individualized Approach to Treatment Decisions May Contribute to Improved Patient Satisfaction
While many patients agree they would like to know about a treatment’s safety (51 percent) and its potential side effects (51 percent), they have a diverse set of needs when choosing a DMT. For example, additional factors include the long term effects of treatment (46 percent), impact of treatment on daily life (46 percent), ability to slow disease progression (46 percent) and ability to reduce the number of relapses (41 percent).1 Physicians recognize that individual patients have different considerations when making treatment decisions, with 98 percent noting that treatment plans should always be customized to their MS patients.
“At Biogen, we strive to advance MS care beyond conducting innovative research and are committed to investing in initiatives like the State of MS that help us better understand and improve the experience of people with MS,” said Gilmore O’Neill, vice president, Multiple Sclerosis Research and Development, Biogen. “We look forward to continued collaboration with the State of MS Consortium to further explore issues affecting the MS community and how we might work to address them.”
About the Survey
This survey was conducted online by Harris Poll on behalf of Biogen among 982 adults diagnosed with multiple sclerosis (“MS patients”) and 900 neurologists who treat MS patients (“neurologists”) within Germany, Italy, Spain, the UK, and the U.S. online between March 18 and April 25, 2014. A portion of these data was previously presented at the Sixth Triennial Joint Meeting of the Americas Committee for Treatment and Research in Multiple Sclerosis and the European Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS-ECTRIMS) in 2014.
About the State of MS Consortium
The survey was led by the State of MS Consortium, an international steering committee of treating neurologists and representatives from patient advocacy organizations across five countries: the U.S., UK, Spain, Germany and Italy. The steering committee members, who were involved in the development and analysis of the survey, include:
- Maggie Alexander, chief executive, European Multiple Sclerosis Platform, representing 39 MS societies from 34 European countries
- Kathy Costello, MS, ANP-BC, MSCN, Associate Vice President, Clinical Care, National MS Society
- Martin Duddy, M.D., consultant neurologist, department of Neurology, Royal Victoria Infirmary, Newcastle upon Tyne, UK
- David E. Jones, M.D., assistant professor, University of Virginia Health System, Charlottesville, VA, U.S.
- Nancy Law, Nancy Law Consulting, LLC (former executive vice president, National Multiple Sclerosis Society, U.S.)
- Mar Tintore, M.D., Ph.D., senior consultant neurologist, Neurology-Neuroimmunology Department, MS Centre of Catalonia, Hospital Vall d’Hebron, Spain
- Antonio Uccelli, M.D., associate professor of Neurology and head of MS Clinic and Neuroimmunology Unit, University of Genoa, Italy
- Robert Weissert, M.D., Ph.D., senior physician and researcher, university professor of Clinical Neurobiology, University of Regensburg, Germany
- Sibyl Wray, M.D., director, Hope Neurology MS Center, Knoxville, Tenn., U.S.
About Multiple Sclerosis
Multiple sclerosis (MS) is a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves. Symptoms may be mild or severe, ranging from numbness in the limbs to paralysis or loss of vision. The progression, severity and specific symptoms of MS are unpredictable and vary from one person to another. MS affects more than 2.3 million people worldwide,2 with more than 500,000 sufferers in the European Union3 and 400,000 in the United States.4 Relapsing forms of MS include: relapsing-remitting MS (RRMS), the most common form of the disease accounting for 85 percent of cases, which is characterized by clearly defined acute attacks with full recovery or with residual deficit upon recovery;5 and progressive-relapsing MS, which affects 5 percent of people with MS and is characterized by steadily worsening disease from the beginning with occasional acute attacks like those experienced by people with RRMS.6
Through cutting-edge science and medicine, Biogen discovers, develops and delivers to patients worldwide innovative therapies for the treatment of neurodegenerative diseases, hematologic conditions and autoimmune disorders. Founded in 1978, Biogen is one of the world’s oldest independent biotechnology company and patients worldwide benefit from its leading multiple sclerosis and innovative hemophilia therapies. For product labeling, press releases and additional information about the company, please visit www.biogen.com.
1 Patients were able to select multiple responses to this question in the survey questionnaire.
2 Multiple Sclerosis International Federation, Atlas of MS 2013. Epidemiology of MS. Page 8. Date Accessed: July 9, 2014. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf
3 Multiple Sclerosis International Federation. Atlas of MS 2013. Epidemiology of MS. Date Accessed: July 9, 2014. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf
4 NMSS. MS Prevalence. Date Accessed: March 20, 2015.http://www.nationalmssociety.org/about-the-society/ms-prevalence/index.aspx
5 NMSS. Relapsing-Remitting MS. Date accessed: March 20, 2015.http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS
6 NMSS. Progressive-Relapsing MS. Date accessed: March 20, 2015.http://www.nationalmssociety.org/What-is-MS/Types-of-MS/Progressive-relapsing-MS
Lindsey Smith, +1-781-464-3260