Kever Anne, Leavitt Victoria M
Translational Cognitive Neuroscience Laboratory, Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA.
Translational Cognitive Neuroscience Laboratory, Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA/Multiple Sclerosis Center, Department of Neurology, Columbia University Irving Medical Center, New York, NY, USA.
Mult Scler. 2022 Feb;28(2):247-256. doi: 10.1177/13524585211037581. Epub 2021 Sep 9.
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.
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.
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.
Development and validation of the DISCO-MS presents the first step toward systematic study of the impact of DISCO on people with MS.
患有多发性硬化症（MS）的个体经常报告说，他们会就是否透露自己的诊断结果或保密做出战略决策；对许多人来说，这是一个关键的压力源。令人惊讶的是，在MS中，关于透露和隐瞒的影响研究不足，并且缺乏正式的测量工具。我们开发了MS中的诊断披露与隐瞒（DISCO-MS）调查，这是一种自我评估工具，用于评估（1）隐瞒行为的频率，以及（2）MS患者诊断披露的预期后果。
采用系统的混合方法对DISCO-MS进行设计和初步验证。在204名MS患者中，研究了DISCO-MS反应与人口统计学、临床变量和情绪之间的关联。
39项的DISCO-MS显示出良好的心理测量特征。约25%的受访者隐瞒自己的诊断，尤其是在职业环境中。更高的隐瞒行为与年龄较小、病程较短和身体残疾程度较低有关。近50%的受访者认为，公开谈论自己的诊断可能会产生不良的职业和人际关系后果。年龄较小、抑郁程度较高和焦虑程度较高与对负面后果的更高预期有关。
DISCO-MS的开发和验证是朝着系统研究诊断披露与隐瞒对MS患者的影响迈出的第一步。
