A national survey in the U.S. revealed that 98% of women newly diagnosed with multiple sclerosis (MS) struggle to discuss important personal concerns with their healthcare team.
The survey was conducted online by Wakefield Research on behalf of Teva Pharmaceutical among 1,000 women diagnosed with MS in the last five years. Survey results were used by Teva and the nonprofit group Can Do MS to develop tools to improve communication between women with MS and healthcare professionals upon a disease diagnosis.
The survey examined the concerns women face after an MS diagnosis, including: ability to care for themselves (reported by 34% of the women surveyed), 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%).
The study also showed that 71% of participants believed talking to their doctor earlier or more openly about those subjects would have helped them in the first six months after their diagnosis.
The main reason women cited for not discussing those concerns with a healthcare professional was the discomfort in doing so.
“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,” Lori Travis, a board-certified neurologist and MS expert practicing at Phoenix Neurological Associates in Arizona, said in a press release.
“The survey findings indicate a strong need for patients and doctors to improve communication and overcome any discomfort there may be around these topics,” Travis added.
Around half of the participants wished they would have covered topics with their healthcare team such as intimacy with a partner (50%), talking about MS with their family (52%), and accepting help from others (51%).
Although there is no evidence to suggest that MS patients are less likely to conceive, many also were concerned about not being able to have children.
Regarding their careers, 52% of the women said that a more informative conversation at the time of diagnosis would have improved the course of their professional lives.
“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” Welch added.
The tools created by Teva and Can Do MS to help women and healthcare professionals address relevant topics are available here.
“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,” said Anne Lee Gilbert, director of programs at Can Do MS.