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.

Diagnosis concealment is associated with psychosocial outcomes in persons with multiple sclerosis

“…Ninety adults with MS were recruited at the Columbia University Multiple Sclerosis Center, 67 of whom had participated in a validation study of our disclosure and concealment (DISCO-MS) survey. 3 The sample comprises patients from the United States, Canada, and the United Kingdom. Sample demographics and clinical characteristics are displayed in Table 1.…”

“…age, sex, race, disease duration, education, depression, anxiety). [1][2][3] To avoid overfit models 5 and multicollinearity, we then used an operational (correlation) approach to determine which of the selected variables appreciably change the association between predictor and outcome variables. Depression levels (i.e.…”

“…Anticipation of negative consequences is particularly pronounced in patients with higher anxiety and depression. 3…”

“…Research indicates that 16%-25% of pwMS actively conceal, particularly in the workplace. [1][2][3] Higher concealment is associated with younger age, shorter disease duration, lower physical disability, and worse anxiety. In addition, pwMS commonly expect disclosure to negatively affect professional and personal relationships.…”

“…Anticipation of negative consequences is particularly pronounced in patients with higher anxiety and depression. 3 While the issue of diagnosis concealment in multiple sclerosis (MS) has recently come to the fore, relatively little is known about its relationship with psychosocial outcomes. Previous studies have established relationships of concealment with clinical outcomes like disability status and psychological reserve (e.g.…”