Assessing diagnosis disclosure and concealment in multiple sclerosis: Development and initial validation of the DISCO-MS survey

Abstract

Background: Individuals with multiple sclerosis (MS) regularly report making strategic decisions about whether to share their diagnosis or keep it a secret; for many, this represents a key stressor. Surprisingly, the impact of disclosure and concealment are understudied in MS and a formal measurement instrument is lacking. We developed the Diagnosis Disclosure and Concealment in MS (DISCO-MS) survey, a self-assessment tool evaluating (1) frequency of concealment behaviors and (2) expected consequences of diagnosis disclosure in persons with MS. Methods: A systematic mixed-methods process was used for the design and initial validation of the DISCO-MS. Associations of DISCO-MS responses to demographics, clinical variables, and mood were examined in 204 participants with MS. Results: The 39-item DISCO-MS shows good psychometric characteristics. Approximately 25% of respondents conceal their diagnosis, particularly in professional settings. Higher concealment behaviors were associated with younger age, shorter disease duration, and lower physical disability. Nearly 50% of respondents believed that talking openly about their diagnosis might have undesirable professional and interpersonal consequences. Younger age, higher depression, and higher anxiety were associated with greater expectations of negative consequences. Conclusion: Development and validation of the DISCO-MS presents the first step toward systematic study of the impact of DISCO on people with MS.