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视觉雪综合征不稳定:对未接触过该病症人群的视觉雪综合征症状的纵向研究。

Visual Snow Syndrome is unstable: A longitudinal investigation of VSS symptoms in a Naïve population.

作者信息

Thompson Amy Claire, Goodbourn Patrick T, Forte Jason D

机构信息

Melbourne School of Psychological Sciences, University of Melbourne, Parkville, Australia.

出版信息

Ann Clin Transl Neurol. 2024 Dec;11(12):3205-3214. doi: 10.1002/acn3.52228. Epub 2024 Oct 23.

Abstract

OBJECTIVE

This study aimed to investigate the nature of subclinical Visual Snow Syndrome (VSS). We sought to develop a means of recruiting naïve participants with subclinical VSS symptoms to participate in research; and to understand whether subclinical VSS symptoms are stable across time. VSS is a recently characterised neurological condition, whose primary symptom is visual snow (dynamic noise in the visual field). There is evidence that VSS may be common in the general population and that it is unnoticed by many who experience it. To fully characterise VSS, it is important to understand whether (and how) subclinical VSS progresses to a clinical form.

METHODS

Here, we present two related studies: Study 1 develops and validates the Melbourne Visual Snow Questionnaire (MVSQ), a tool for screening the general population for VSS symptoms; and Study 2 investigates the stability of subclinical VSS. We developed the MVSQ based on the results of other recent work investigating undiagnosed cases of VSS, and a validated questionnaire designed to identify people with tinnitus for research participation. We then tested the MVSQ in a population with clinical VSS, including assessing face validity (i.e., the extent to which people with clinical VSS believed the questionnaire accurately captured their symptoms). In Study 2, we deployed the MVSQ in a naïve sample of 155 participants, who completed the MVSQ twice, 6 weeks apart.

RESULTS

The results of Study 1 indicated that the MVSQ was a viable method of recruiting people who experience VSS symptoms for research participation. It was deemed to have appropriate face validity and to pose little burden to those who completed it. In Study 2, VSS symptoms changed substantially across a 6-week period. Cohen's weighted kappa for diagnosis was 0.56, 95% CI [0.43, 0.69]. However, the impact of perceptual experiences was low and did not change over time, rank ICC = 0.71, 95% CI [0.59, 0.82].

INTERPRETATION

The MVSQ is appropriate for assessing perceptual experiences in the general population. Determining the exact time scale across which symptoms fluctuate is important for understanding both clinical and subclinical cases of VSS.

摘要

目的

本研究旨在调查亚临床视觉雪综合征(VSS)的本质。我们试图开发一种方法来招募有亚临床VSS症状的未接触过相关研究的参与者参与研究;并了解亚临床VSS症状随时间是否稳定。VSS是一种最近被描述的神经系统疾病,其主要症状是视觉雪(视野中的动态噪声)。有证据表明VSS在普通人群中可能很常见,且许多有此症状的人并未注意到。为全面描述VSS,了解亚临床VSS是否(以及如何)进展为临床形式很重要。

方法

在此,我们展示两项相关研究:研究1开发并验证了墨尔本视觉雪问卷(MVSQ),这是一种用于在普通人群中筛查VSS症状的工具;研究2调查亚临床VSS的稳定性。我们基于近期其他关于未确诊VSS病例的研究结果以及一份经过验证的旨在识别耳鸣患者以参与研究的问卷开发了MVSQ。然后我们在患有临床VSS的人群中测试了MVSQ,包括评估表面效度(即临床VSS患者认为问卷准确反映其症状的程度)。在研究2中,我们在155名未接触过相关研究的参与者样本中应用了MVSQ,他们相隔6周完成两次MVSQ。

结果

研究1的结果表明,MVSQ是招募有VSS症状的人参与研究的可行方法。它被认为具有适当的表面效度,且对完成问卷的人负担较小。在研究2中,VSS症状在6周内有显著变化。诊断的科恩加权kappa系数为0.56,95%置信区间[0.43, 0.69]。然而,感知体验的影响较低且未随时间变化,等级组内相关系数ICC = 0.71,95%置信区间[0.59, 0.82]。

解读

MVSQ适用于评估普通人群的感知体验。确定症状波动的确切时间尺度对于理解VSS的临床和亚临床病例都很重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7a6f/11651197/1e7c0c07695d/ACN3-11-3205-g002.jpg

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