Multiple sclerosis (MS) patients and their neurologists noted some discomfort in discussing MS symptoms, found a survey presented at the ACTRIMS-ECTRIMS conference in September.
Discussing multiple sclerosis (MS) symptoms is viewed positively by neurologists and patients, but remains a struggle, according to research presented at the joint ACTRIMS-ECTRIMS conference held September 10-13 in Boston.
Surveyors from Harris Poll, on behalf of Biogen Idec, developed a survey which encompassed neurologists from 5 countries (Germany, Italy, Spain, the United States, and the United Kingdom) and representatives from patient advocacy groups between March and April 2014. The survey was conducted in order to gain a deeper understanding of MS patients’ lives and to highlight communication between MS patients and their doctors.
About 83 percent of patients noted they felt comfortable talking with their neurologists about MS and reported their neurologist provided them with helpful information (81 percent). Nearly all neurologists surveyed (96 percent) felt they had an open dialogue with patients, and said patients can ask them anything they want. The majority of neurologists (90 percent) indicated they had a good understanding of their patients’ disease; however, the surveyors note a disconnect is still present surrounding certain MS symptoms.
Almost 20 percent of patients who experience MS symptoms report being uncomfortable with their neurologist about the following: difficulty walking (19 percent), tremors (19 percent), and muscle spasms (18 percent). However, only 2-3 percent of neurologists noted these same topics as uncomfortable for discussion with their patients. Neurologists across the board identified similar topics that were uncomfortable in discussion, and anticipate a higher level of discomfort than described by patients. These symptoms identified by neurologists as uncomfortable were: sexual difficulties (28 percent, with 87 percent perceiving this as uncomfortable for patients), bladder or bowel problems (28 percent, 54 percent), mood swings (26 percent, 37 percent), and cognitive or memory issues (21 percent, 37 percent).
Communication can be hindered by time constraints (neurologists rated this 47 percent, and patients 21 percent) and “not wanting to be perceived as difficult” (patients rated this 24 percent).
The surveyors note this study does not only demonstrate the communication gap between neurologists and patients but also highlights where communication is succeeding. They note 63 percent of physicians recommend in-office materials to their patients, while 19 percent of patients cite these materials as most helpful. Another highlighted finding stated 72 percent of patients find information online or social media resources helpful for disseminating MS information, and these resources are recommended by 72 percent of neurologists.
Many neurologists noted a need for more resources to provide to patients, including on the topics of cognitive function (49 percent), managing the emotional challenges of being an MS patient (45 percent), and sexual activity (43 percent).
“At Biogen Idec, we believe that successful MS treatment extends beyond medication,” said Gilmore O’Neill, vice president, Multiple Sclerosis Research and Development, Biogen Idec. “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. 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.”