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

Adult Humans Multiple Sclerosis / diagnosis Surveys and Questionnaires
Cognitive efficiency Concealment Diagnosis experience Disclosure Multiple sclerosis Psychosocial factors Quality of life

Journal

Multiple sclerosis and related disorders
ISSN: 2211-0356
Titre abrégé: Mult Scler Relat Disord
Pays: Netherlands
ID NLM: 101580247

Informations de publication

Date de publication:
Dec 2022
Historique:
received: 01 08 2022
revised: 10 10 2022
accepted: 23 10 2022
entrez: 22 12 2022
pubmed: 23 12 2022
medline: 24 12 2022
Statut: ppublish

Résumé

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.

Sections du résumé

BACKGROUND 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 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 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 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.

Identifiants

DOI: 10.1016/j.msard.2022.104373 PMID: 36544320
pubmed: 36544320
pii: S2211-0348(22)00877-X
doi: 10.1016/j.msard.2022.104373
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

104373

Informations de copyright

Copyright © 2022 Elsevier B.V. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of Competing Interest VML: Advisory Board: Biogen. Non-promotional speaker: Novartis. Compensation for reviewing: National Institutes of Health, Department of Defense. Chief Scientific Officer and cofounder of eSupport Health, PBC. AMK: Nothing to disclose. SMW: Nothing to disclose. RTS: Consulting: Octave Bioscience. Compensation for reviewing: American Medical Association, National Institutes of Health, Department of Defense, Emerson Collective. HS: Nothing to disclose. SMA: Nothing to disclose. AS: Advisory Board: Almirall, Merck. Speaking: Biogen, Merck, Teva. AJS: Advisory Board: Genentech, Biogen, Alexion, Celgene, Greenwich Biosciences, Horizon Therapeutics, TG Therapeutics. Consulting: Octave Bioscience. Non-promotional speaking: EMD Serono. Research support: Bristol Myers Squibb. Trainee funding: Biogen. Contracted Research: Sanofi, Biogen, Novartis, Actelion, Genentech/Roche. Expert witness testimony. Funding was provided by the University of Vermont Multiple Sclerosis Center.

Auteurs

V M Leavitt (VM)

Department of Neurology, Columbia University Irving Medical Center, 630 W. 168th Street, Box 16, New York, NY 10032, USA. Electronic address: vl2337@cumc.columbia.edu.

A M Kever (AM)

Department of Neurology, Columbia University Irving Medical Center, 630 W. 168th Street, Box 16, New York, NY 10032, USA.

S M Weinstein (SM)

Department of Biostatistics, Epidemiology, and Informatics, Perelman School of Medicine, Penn Statistics in Imaging and Visualization Center, University of Pennsylvania, Philadelphia, PA, USA.

R T Shinohara (RT)

Department of Biostatistics, Epidemiology, and Informatics, Perelman School of Medicine, Penn Statistics in Imaging and Visualization Center, University of Pennsylvania, Philadelphia, PA, USA.

H Schmidt (H)

Accelerated Cure Project, Waltham, MA, USA.

S M Aoun (SM)

Perron Institute for Neurological and Translational Science, University of Western Australia, La Trobe University, Australia.

A Solari (A)

Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.

A J Solomon (AJ)

Department of Neurological Sciences, Larner College of Medicine at the University of Vermont, University Health Center - Arnold 2, 1 South Prospect Street, Burlington, VT, USA.

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Classifications MeSH

questionsmedicales.fr › Personnes › Tranches d'âge › Adulte › Diagnosis concealment is prevalent in MS, and...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Diagnosis concealment is prevalent in MS, and...
questionsmedicales.fr › Maladies du système immunitaire › Maladies auto-immunes › Maladies auto-immunes du système nerveux › Maladies démyélinisantes auto-immunes du SNC › Sclérose en plaques › Diagnosis concealment is prevalent in MS, and...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Diagnosis concealment is prevalent in MS, and...