Assessing diagnosis disclosure and concealment in multiple sclerosis: Building a framework for moving forward

Background. Multiple sclerosis (MS) is the leading cause of nontraumatic neurological disability in young adults in Europe and in the United States. The uncertainty regarding its evolution makes the diagnosis disclosure a difficult process.Objective. The aim of the study was to provide patients’ global perspective towards MS diagnosis communication.Methods. 150 consecutive patients, recently diagnosed with CIS or MS, were asked to complete a 17-item questionnaire assessing factors influencing their satisfaction with the information provided.Results. Eighty-six patients fulfilled diagnostic criteria for MS and 64 for CIS. Diagnosis disclosure took place in a private setting and required in most cases (87.3%) less than 30 minutes. Most patients reported being moderately or highly satisfied with the information provided (75%). The degree of satisfaction seems significantly related to patients’ younger age, a longer time dedicated to disclose the diagnosis, a CIS diagnosis, and, above all, tailored information and an adequate emotional support.Conclusion. Most patients reported a good degree of satisfaction about the communication of MS or CIS diagnosis. A fruitful relationship between patient and neurologist is essential to obtain a better acceptance of the disease, patients’ compliance with chronic treatments and to improve patients’ quality of life.

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

Multiple Sclerosis Journal ◽

10.1177/13524585211037581 ◽

2021 ◽

pp. 135245852110375

Author(s):

Anne Kever ◽

Victoria M Leavitt

Keyword(s):

Multiple Sclerosis ◽

Assessment Tool ◽

Measurement Instrument ◽

Negative Consequences ◽

Strategic Decisions ◽

Self Assessment ◽

Diagnosis Disclosure ◽

Initial Validation ◽

Younger Age ◽

The Impact

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.

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