National Survey Reveals Majority of Women Newly Diagnosed with Multiple Sclerosis Have Concerns They Aren’t Discussing With Their Healthcare Team
November 8th, 2017
Teva Pharmaceuticals and Nonprofit Group Can Do MS Team Up to Offer Tools for Better Communication Between Women with MS and Their Healthcare Providers
Frazer, PA, and Avon, CO, November 8, 2017 – Approximately 400,000 people in the U.S. have Multiple sclerosis (MS), an unpredictable disease of the central nervous system that affects 2-3 times as many women as men. Onset is usually between the ages of 20-40, a time when many women are building their careers, personal lives and families. Women newly diagnosed with MS have significant concerns about how these parts of their lives could change, but a survey asking about personal relationships, reproductive issues and employment concerns shows 98% felt many of these concerns were not addressed by their healthcare team when first diagnosed. The survey was conducted by Wakefield Research for Teva Pharmaceuticals among 1,000 women diagnosed with MS in the last 5 years. It also showed that 71% of respondents believed talking to their doctor earlier or more openly would have made the first six months after diagnosis easier. To empower women to take charge of their MS, Teva and Can Do MS have developed tools to help women and healthcare professionals engage right from the start about topics that matter to women. These resources can be found at mscando.org/womenandms.
The top reason women cited for not talking to a doctor or other healthcare professional about either their work, family planning or personal relationship concerns was that they aren’t comfortable talking about them. The new survey is an important examination of these areas and the concerns women face after diagnosis, including: ability to care for themselves (34%), ability to care for their current or future children (22%), career and work life demands (17%), ability to have children (15%) and personal relationships (13%).
“Having open and candid conversations with your doctor is a cornerstone of great care and disease management, especially when you have a chronic condition like MS,” said Dr. Lori Travis, a board-certified neurologist and MS expert practicing at Phoenix Neurological Associates in Arizona. “The survey findings indicate a strong need for patients and doctors to improve communication and overcome any discomfort there may be around these topics. Transparency can help healthcare professionals address unmet needs for women who are still struggling with the news of their diagnosis.”
Other highlights from the survey include:
- 94% of women said that having a family is important to them, but 69% expressed concern at diagnosis that they would not be able to have children. Yet, women with MS are just as likely to conceive as those without MS. Of those with family planning concerns, more than half didn’t speak to a neurologist (59%) or their primary care physician (51%).
- 50% of women said they wish they had asked about intimacy with a partner at the time of their MS diagnosis, while 31% of women said they wished they had asked about dating with MS.
- Women also said they needed more help to navigate the stress that MS puts on relationships. The topics they wish they had covered with their healthcare team when they were first diagnosed include: talking about MS with their family or children (52%), accepting help from family and friends (51%) and talking about MS with a significant other (51%).
- As it relates to their professional life, 52% strongly believe the course of their career would have been significantly better if they had known more information at the time of their diagnosis.
- Among those women with MS who were employed at the time of their diagnosis, 51% wish they had asked where to find information about their legal rights at work. In addition, 48% wish they had discussed what they should and shouldn’t share about their MS at work, and 47% wish they had discussed information about options to help them continue working.
“These survey results play an important role in bringing to the forefront issues not always discussed in a patient-doctor setting,” said Anne Lee Gilbert, Director of Programs at Can Do MS. “At Can Do MS, we are committed to helping people affected by MS increase their education, expand their knowledge and talk openly about what they want now and in the future. We look forward to making these resources available to women with MS that support the work, relationship and family planning issues that are on their minds.”
“The compelling findings from this survey, coming straight from women who have already traveled this road, have helped us get right to the heart of the questions and concerns they wished they asked their healthcare team at the start of their MS journey,” said Amanda Welch, Director of MS Marketing, at Teva. “These insights can help deepen our understanding of what women face and how we can offer support during the critical and emotional time immediately after diagnosis.”
The resources Can Do MS worked with Teva to create, using the feedback from the survey and the expertise of MS healthcare professionals, are available at mscando.org/womenandms and include:
- Tips for women newly diagnosed with MS
- Questions for women to ask their healthcare team
- HCP guide to survey results and patient conversation
About Multiple Sclerosis
Multiple sclerosis (MS) is a condition that affects the central nervous system (CNS), made up of the brain and spinal cord, which serves as the ‘command center’ for your entire body, controlling every movement and sensation. MS can cause a variety of neurological symptoms, which for many people, can flare-up and then subside over the course of days, months, or even years. The symptoms experienced by MS patients can vary significantly, but the most common symptoms experienced include some combination of fatigue, vision problems, numbness and tingling, muscle spasms, stiffness and weakness, mobility problems, pain, problems with thinking, learning and planning, depression and anxiety, sexual problems, bladder problems, bowel problems, and speech and swallowing difficulties. MS affects everyone differently, but there are two main types of MS – relapsing-remitting multiple sclerosis (RRMS) and primary progressive multiple sclerosis (PPMS). There are an estimated 10,400 new MS cases diagnosed every year. It is not known what causes MS, and there is no cure.
About The Survey
The survey was conducted by Wakefield Research (www.wakefieldresearch.com) for Teva Pharmaceuticals from August 11-30, 2017, among 1,000 women in the United States ages 18+ diagnosed with MS in the last 5 years through an email invitation and an online survey. The margin of error for the survey was +/- 3.1 percentage points.
About Can Do MS
A national nonprofit organization based in Avon, Colorado, Can Do MS delivers health education programs on exercise, nutrition and symptom management to inspire and motivate long-lasting change for those with MS and their families to help them thrive. For more information, visit the organization’s website at mscando.org or call 800-367-3101.
Teva Pharmaceutical Industries Ltd. is a leading global pharmaceutical company that delivers high-quality, patient-centric healthcare solutions used by approximately 200 million patients in over 60 markets every day. Headquartered in Israel, Teva is the world’s largest generic medicines producer, leveraging its portfolio of more than 1,800 molecules to produce a wide range of generic products in nearly every therapeutic area. In specialty medicines, Teva has the world-leading innovative treatment for multiple sclerosis as well as late-stage development programs for other disorders of the central nervous system, including movement disorders, migraine, pain and neurodegenerative conditions, as well as a broad portfolio of respiratory products. Teva is leveraging its generics and specialty capabilities in order to seek new ways of addressing unmet patient needs by combining drug development with devices, services and technologies. For more information, visit www.tevapharm.com.
To view more information about the campaign and detailed survey findings, please see below.