The postdoctoral researcher at Columbia University discussed the use of the DISCO-MS survey and its potential for future research projects.
"The second part, maybe more interestingly, is to see why patients conceal and what are their actual expected consequences. Is it more at a relationship level? A professional level? Maybe there are people who don’t conceal because they see the advantage in sharing their diagnosis.”
At the ACTRIMS Forum 2021, a study evaluated the associations of diagnosis disclosure and concealment behaviors in patients with multiple sclerosis (MS) with anxiety and depression. Led by Anne Kever, PhD, patients included in the study completed the 39-item DISCO-MS survey, which contained 2 parts, the first looked at frequency of concealment behaviors while the second evaluated expected consequences of diagnosis disclosure.
Relationships of these factors to mood, measured with Hospital Anxiety and Depression Scale, were assessed. Results showed that greater perceived emotional burden and negative consequences of disclosure were both associated and linked to worse depression and higher anxiety. Kever, a postdoctoral researcher at Columbia University, noted that there is great potential for the DISCO-MS survey in uncovering more about the effects of diagnosis disclosure.
In an interview with NeurologyLive, she discussed how the survey came about, which modifications may come in the future, and other end points she and her colleagues would be interested in observing.