Highlights
- •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.
Abstract
Background
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.
Methods
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.
Results
428 adults with MS participated. 49% (N = 201) conceal their diagnosis. Higher education [t(405) = 3.66, p < 0.001], younger age (r = −0.15, p = 0.002), and shorter disease duration (r = −0.18, p = 0.010) were associated with higher concealment. 39% (N = 159) anticipate negative consequences of disclosure. Individuals reporting positive
diagnosis experience (26%, N = 102) were less likely to conceal later in disease course compared to those with
negative experience (34%, N = 136) [t(233) = 2.483, p = 0.014]. Patients whose MS providers discussed disclosure (23%, N = 73) anticipated less negative consequences of disclosure [t(323) = 2.475, p = 0.014].
Conclusions
Diagnosis concealment is common in MS. Favorable diagnosis experience and provider
attention to the topic of disclosure throughout the MS disease course may influence
diagnosis concealment.
Keywords
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Article info
Publication history
Published online: October 28, 2022
Accepted:
October 23,
2022
Received in revised form:
October 10,
2022
Received:
August 1,
2022
Identification
Copyright
© 2022 Elsevier B.V. All rights reserved.
