Findings from an international survey show differences in the perceptions of people living with multiple sclerosis (MS) and neurologists when discussing MS symptoms, including those that are personal and sensitive. While the results generally suggest a positive assessment of current practice in MS, important gaps were identified that could potentially impact disease management and patient quality of life. These findings will be presented this week 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 Boston.

The survey, commissioned by Biogen Idec and conducted online by Harris Poll, 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. The survey involved MS patients and neurologists who treat the disease in Germany, Italy, Spain, the United Kingdom (UK) and United States (US) and aimed to understand the current experiences of those living with and treating the disease, including communication between MS patients and their physicians.

“There are a variety of symptoms a person living with MS can experience, and as physicians we need to constantly evaluate the most effective strategies to address all of our patients’ needs,” said Mar Tintore, M.D., Ph.D., senior consultant neurologist, Neurology-Neuroimmunology Department, MS Centre of Catalonia, Hospital Vall d’Hebron, Barcelona, Spain. “This survey illustrates that while there is a high degree of satisfaction with overall physician-patient communication, disconnects between patients and physicians mean some symptoms could be under-managed.”Despite Open Communication, Discomfort Remains in Discussing Typical Symptoms, Including Those That Are Private and Sensitive.

More than eight in ten patients (83 per cent) say they feel comfortable talking about their MS with their neurologists, noting their neurologist provides them with helpful information (81 per cent). Moreover, 85 per cent of patients characterise their neurologist as honest in setting their expectations for therapy success. Similarly, nearly all neurologists (96 per cent) feel they have an open dialogue in which their patients can ask any question they want, and 90 per cent indicate they have a good understanding of all aspects of their patients’ disease. Yet a divide exists specifically around communication about certain MS symptoms.

Neurologists tend to underestimate their patients’ discomfort talking about MS symptoms often associated with the disease, while overestimating patient discomfort discussing other, more private symptoms. Nearly one in five patients who experience MS symptoms report being uncomfortable speaking with their neurologist about their difficulty walking (19 per cent), tremors (19 per cent) and muscle spasms (18 per cent), but only two to three percent of neurologists identify these symptoms as uncomfortable topics for their patients to discuss with them. Conversely, neurologists are in alignment with patients when identifying the most difficult topics for patients to discuss, and tend to expect a higher level of discomfort than what is expressed by patients. The sensitive symptoms that emerged as the most uncomfortable for patients to discuss were sexual difficulties (54 per cent of patients, with 87 per cent of neurologists perceiving this as being uncomfortable for patients) bladder or bowel problems (28 per cent; 54 per cent), mood swings (26 per cent; 37 per cent) and cognitive/memory issues (21 per cent; 37 per cent).

Not surprisingly, time constraints are cited as the greatest barrier by neurologists (47 per cent) when it comes to patient communication. For patients, however, not wanting to be perceived as being “difficult” was cited as the barrier that most interfered with communication with their physicians (24 per cent), followed by time constraints (21 per cent).

“The discomfort reported by both people living with MS and treating physicians suggests that important conversations about all of the symptoms associated with MS may not be happening,” said Maggie Alexander, chief executive, European Multiple Sclerosis Platform (EMSP). “People with MS and their physicians should be empowered and equipped to discuss all aspects of the disease. This open and honest dialogue is critical to achieving improved quality of life and better long-term outcomes.”

While the survey shows communication gaps between patients and neurologists exist, findings also demonstrate respondents are seeking information about the disease: Sixty-three per cent of physicians recommend materials available at their office to their patients, while only 19 per cent of patients cite these materials as most helpful; Seventy-two percent of patients find online and social media resources most helpful for finding information about MS; these resources are also recommended by 73 per cent of physicians to their patients.

Many neurologists indicate a desire for additional resources to provide to their MS patients, including information on maintaining cognitive function (49 per cent), managing the emotional challenges of having MS (45 per cent) and being sexually active (43 per cent).

“At Biogen Idec, we believe that successful MS treatment extends beyond medication. Our goal with this survey was to better understand the needs of the patient and the physician, and through that understanding bring a new awareness to the importance of a comprehensive dialogue about MS,” said Gilmore O’Neill, vice president, Multiple Sclerosis Research and Development, Biogen Idec. “Our alliance with the State of MS Consortium will ultimately help us work with the MS community to address these issues and continue to improve care.”

In collaboration with the State of MS Consortium, an in-depth report of these findings and perspectives from the committee members is currently under development, and will be available to the MS community by the end of the year. As part of its ongoing commitment, Biogen Idec continues to evaluate the results of this survey and work with the community to identify new and innovative solutions to improve care for MS patients.