Survey: Most newly diagnosed women aren’t sharing concerns with healthcare team

November 16, 2017
A new survey asking about personal relationships, reproductive issues, and employment concerns shows 98 percent of women newly diagnosed with MS felt many of these concerns were not addressed by their healthcare team when first diagnosed. It also found that 71 percent of respondents believed talking to their doctor earlier or more openly would have made the first six months after diagnosis easier.
 
The top reason women cited for not talking to a doctor or other healthcare professional about their work, family planning, or personal relationship concerns was that they aren’t comfortable talking about them. The survey examined these areas and the concerns women face after diagnosis, including: ability to care for themselves (34 percent), ability to care for their current or future children (22 percent), career and work life demands (17 percent), ability to have children (15 percent) and personal relationships (13 percent).
 
The survey was conducted by Wakefield Research for Teva Pharmaceuticals among 1,000 women diagnosed with MS in the last five years. Other highlights from the survey include:
 
* 94 percent of women said that having a family is important to them, but 69 percent expressed concern at diagnosis that they would not be able to have children. Of those with family planning concerns, more than half didn’t speak to a neurologist (59 percent) or their primary care physician (51 percent).
 
  • 50 percent of women said they wish they had asked about intimacy with a partner at the time of their MS diagnosis, while 31 percent 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 percent), accepting help from family and friends (51 percent) and talking about MS with a significant other (51 percent).
  • As it relates to their professional life, 52 percent 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 percent wish they had asked where to find information about their legal rights at work. In addition, 48 percent wish they had discussed what they should and shouldn’t share about their MS at work, and 47 percent wish they had discussed information about options to help them continue working.
 
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. The resources Can Do MS worked with Teva to create, using the feedback from the survey and the expertise of MS healthcare professionals, include:
 
  • Tips for women newly diagnosed with MS
  • Questions for women to ask their healthcare team
  • HCP guide to survey results and patient conversation
 
These resources can be found at mscando.org/womenandms.
 
MS Focus is not affiliated with Can Do MS or Teva Pharmaceuticals. MS Focus had no role in developing the content. We provide this information to the MS community about the services of our fellow MS Coalition member organization as a courtesy to those who may benefit.

MS Focus Lending Library


Books, DVDs, and CDs are available for loan, by mail across the United States.
Learn more

Study uncovers potential risks of common MS treatment


Study finds an increased risk of events such as stroke, migraine, and depression, and abnormalities in the blood with taking beta interferon for MS.
Learn more