- •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 < 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].
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.
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Topcu G, Mhizha-Murira JR, Griffiths H, Bale C, Drummond A, Fitzsimmons D, Potter KJ, Evangelou N, das Nair R. Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies. Disabil Rehabil. 2022 Mar 7:1-12. doi: 10.1080/09638288.2022.2046187. Epub ahead of print. PMID: 35254195.
Published online: October 28, 2022
Accepted: October 23, 2022
Received in revised form: October 10, 2022
Received: August 1, 2022
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