February 26, 2021
1 min read
Kever A, et al. Abstract P031. Presented at: ACTRIMS Forum; Feb. 25-27, 2021 (virtual meeting).
The researchers report no relevant disclosures.
A survey instrument developed to assess disclosure vs. concealment of MS diagnosis identified an association with depression and anxiety, according to research presented at the ACTRIMS virtual meeting.
“Persons with (MS) regularly report making strategic decisions about whether to share their diagnosis or keep it a secret; for many, this represents a key stressor,” the researchers wrote. “Surprisingly, disclosure and concealment remain largely understudied in MS and a formal measurement instrument is lacking.”
Kever and Leavitt developed the DISCO-MS, a self-assessment tool to evaluate the frequency of concealment behaviors and expected consequences of diagnosis disclosure among patients with MS, with mixed methods, including literature review, assessment of other instruments, focus group interviews, item generation and scale administration, and used exploratory cluster and confirmatory factor analyses in addition to item-scale correlations for validation. The study’s 204 participants (mean age, 46±12 years years; 84% women) completed the DISCO-MS and Hospital Anxiety and Depression Scale (HADS). Disease duration ranged from 1 to 41 years. Depression and anxiety scores were very high among 15.2% and 25.5% of participants, respectively.
The researchers noted relationships between the HADS depression score and the emotional burden of concealment, negative consequences of disclosure, positive consequences of disclosure, negative consequences of disclosure for relationships and negative professional consequences of disclosure (all P < .001). They also observed relationships between the HADS anxiety score and concealment behavior (P < .001), the emotional burden of concealment (P < .001), negative consequences of disclosure (P < .001), positive consequences of disclosure (P = 0.44), negative consequences of disclosure for relationships (P < .001) and negative professional consequences of disclosure (P = .044).
“Depression and anxiety are related to concealment behaviors and might keep patients from disclosing their MS,” researchers wrote. “The DISCO-MS represents an important starting point for systematic research on diagnosis disclosure and concealment, a significant source of stress for persons with MS.”