A recent diagnosis of multiple sclerosis (MS) leads to strong emotions including despair and hopelessness, according to a new study published in the journal Multiple Sclerosis and Related Disorders. These emotions can have an impact on the initial disease-modifying therapy decision.
“Health care professionals need to understand the lived experience of patients making [disease modifying treatment] decisions soon after diagnosis when engaging in shared decision making,” the authors wrote.
MS is a disabling condition that can cause many complications and reduce a person’s life expectancy, and the diagnosis can have a dramatic impact on a person’s psychological and emotional health.
Today, there are more than a dozen disease-modifying therapies approved by the US Food and Drug Administration. These treatments are aimed at delaying the progression of the disease.
With so many options and having to make a decision soon after diagnosis about their initial choice of disease-modifying therapy, patients often find themselves in a difficult position.
Read more about MS therapies
In the present study, a team of researchers led by Hazel Roddam, PhD, from the University of Central Lancashire in Preston, England investigated the views and experiences of patients with relapsing-remitting MS who were recently diagnosed about their decision-making regarding their initial disease-modifying treatment choice.
The team conducted semistructured interviews with 6 patients. They found that patients’ initial reactions to diagnosis were characterized by strong emotions and feelings. There were 3 themes that emerged when the patients’ answers were analyzed: shock and hopelessness, the disease-modifying treatment decision, and considering the future with disease-modifying treatment.
The disease-modifying treatment decision was shaped by multiple considerations, which included maintaining normality, and restoring hope and control over the person’s life while reconciling the lack of certainty about efficacy. When they were considering their futures with disease-modifying therapies, patients mostly thought about their employment and about family planning.
The initial disease-modifying therapy decision should not be thought of as a “one-off” as the lived experiences of patients are likely to change and develop within the next months following diagnosis, the researchers concluded.
Carey G, Wilson N, Janssen J, Chohan A, Rog D, Roddam, H. “I’m walking into the unknown”: qualitative insights into how emotions and lived experience related to multiple sclerosis diagnosis impact on decisions to pursue disease modifying treatment. Mult Scler Relat Disord. 2022;58:103464. doi:10.1016/j.msard.2021.103464