To develop and validate the DISCO, a novel survey instrument quantifying diagnosis disclosure and concealment in persons with multiple sclerosis (MS).

A 49-item pilot questionnaire was developed based on (1) clinical (anecdotal) observations in MS and (2) existing scales developed for use in other clinical populations. Items measured, e.g., frequency of sharing diagnosis with others, perception of attitudes of others if diagnosis is disclosed. A focus group was recruited to pilot the instrument and provide initial feedback for refining the survey prior to deployment in a large sample of patients with MS. Focus group participants were asked to complete the survey and rate each item’s relevance for themselves personally.

A focus group of MS patients (N=5; age range 35-57 years; 4 females, 1 male; disease duration range 1-17 years) completed the pilot version of the DISCO. Based on feedback, a total of 36 items were selected for inclusion in the DISCO version 1, to be deployed to ≥360 patients with MS. Items fell into one of two overarching categories: behaviors (Part 1) and consequences (Part 2).

Potential factors to be evaluated with the DISCO v.1 include emotional sequelae, stigma, and perceived consequences of disclosure and concealment. Ultimately, the DISCO will enable evaluation of quantifiable consequences of diagnosis concealment and disclosure, a potentially critical stressor for persons with MS.