Steps Needed to Improve MS Diagnosis Disclosure Rates: Anne Kever, PhD

March 24, 2021
Anne Kever, PhD

Post-doctoral research fellow, Department of Cognitive Neuroscience, Columbia University Irving Medical Center

The postdoctoral researcher at Columbia University discussed ways clinicians and patients with multiple sclerosis can take to ease the transition of disclosing their diagnosis.

"What we want is to get clinicians to be better prepared to help patients figure out whether sharing or concealing their diagnosis is the way to go, and how to best deal with the consequences of each of these choices.”

A study presented at the ACTRIMS Forum 2021, February 25-27, by Anne Kever, PhD, found that diagnosis disclosure and concealment attitudes and behaviors are related to anxiety and depression in persons with multiple sclerosis (MS). The study included 107 patients with MS who completed the 39-item DISCO-MS survey, which measured frequency of concealment behaviors and expected consequences of diagnosis disclosure.

Kever, a postdoctoral researcher at Columbia University, shared that there are a number of reasons why a patient may feel uncomfortable with disclosing their diagnosis, many of which are gaining understanding among clinicians. Additionally, Kever’s work sheds light on an area that she and her colleagues feel is a tractable treatment target for novel interventions.

To date, research on the effects of diagnosis disclosure has been fairly limited. There have been no longitudinal data on how it may impact cognition, nor other quality of life measures. In an interview with NeurologyLive, Kever discussed the steps needed to take in order to improve diagnosis disclosure rates within the MS community. She also touched on the idea of crossing over psychological care with MS care and using multidisciplinary teams to alleviate concealment.

REFERENCE
Kever A, Leavitt VM. DISCO-MS survey of disclosure and concealment in MS: associations with anxiety and depression. Presented at ACTRIMS Forum 2021; February 25-27, 2021. Abstract P031.