Part I. Investigating associations of diagnosis disclosure with psychosocial outcomes in persons with multiple sclerosis (pwMS); Part II. completion of a group-based psychoeducational pilot program addressing the issue.

Individuals with MS frequently face the difficult decision of how/whether to disclose their diagnosis. Our work showed that up to 25% of pwMS actively conceal, particularly in professional settings. Higher concealment is associated with younger age, shorter disease duration, lower physical disability, and worse anxiety. Relatively little is known about the impact of concealment on psychosocial outcomes such as loneliness, social support, and self-efficacy. Treatment strategies targeting diagnosis concealment issues are needed.

Part I. Ninety pwMS completed the DISCO-MS survey, assessing concealment behavior and expected consequences of disclosure; the UCLA loneliness scale; the MS Social Support survey; the General Self-Efficacy scale; and the Self-Efficacy for Managing Chronic Diseases scale. Correlations assessed links between DISCO-MS scores and psycho-social variables. Part II. Fourteen pwMS were enrolled in in focus groups to evaluate DISCO-Talk, a structured group-based psychoeducational pilot program. Two groups (each n=7) met weekly via Zoom for 3 moderated sessions, each framed around a specific theme.

Part I. Higher concealment was associated with worse loneliness and lower social support. Higher anticipated negative consequences of disclosure were associated with worse loneliness, lower social support, and lower general and chronic disease self-efficacy. Consistently, higher anticipated positive consequences were related to lower loneliness. Part II. Completion rate was high (92.8%) as was adherence (90.4%). Qualitative participant feedback revealed that 100% found the program to be worth their time and would recommend participation to other pwMS.

Concealment is associated with loneliness and self-efficacy in pwMS. Tailored interventions addressing diagnosis concealment and its consequences are warranted.