Diagnosis concealment is prevalent in MS, and associated with diagnosis experience

•Approximately half of all individuals with multiple sclerosis conceal their diagnosis from others, particularly in professional spheres.•Individuals who had a more positive diagnosis experience are less likely to conceal their diagnosis later in the disease course.•Individuals with multiple scleros...

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Veröffentlicht in:Multiple sclerosis and related disorders 2022-12, Vol.68, p.104373-104373, Article 104373
Hauptverfasser: Leavitt, V.M., Kever, A.M., Weinstein, S.M., Shinohara, R.T., Schmidt, H., Aoun, S.M., Solari, A., Solomon, A.J.
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Sprache:eng
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Zusammenfassung:•Approximately half of all individuals with multiple sclerosis conceal their diagnosis from others, particularly in professional spheres.•Individuals who had a more positive diagnosis experience are less likely to conceal their diagnosis later in the disease course.•Individuals with multiple sclerosis whose MS provider has discussed the issue of disclosure and concealment with them have less anticipation of negative consequences of disclosure.•Provider attention to the topic of diagnosis disclosure and concealment may be effective for reducing some of the stress individuals experience around this prevalent issue. Receiving a diagnosis of multiple sclerosis (MS) can be stressful; later, patients may conceal their diagnosis. Here, we aimed to (1) assess prevalence of disclosure and concealment behaviors, and (2) explore whether diagnosis experience is associated with later concealment and if MS provider engagement on this topic modifies concealment. In a survey-based study, MS patients completed DISCO-MS assessing disclosure and concealment and responded to questions about diagnosis experience and practitioner attention to disclosure. Frequency analysis and Pearson's correlations were used in exploratory analyses. 428 adults with MS participated. 49% (N = 201) conceal their diagnosis. Higher education [t(405) = 3.66, p 
ISSN:2211-0348
2211-0356
DOI:10.1016/j.msard.2022.104373