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多发性硬化症患者认知、交流和吞咽功能的自我报告变化:来自瑞典多发性硬化症登记处和全国性调查的数据。

Self-Reported Changes in Cognition, Communication and Swallowing in Multiple Sclerosis: Data from the Swedish Multiple Sclerosis Registry and from a National Survey.

机构信息

Division of Speech and Language Pathology, Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Stockholm, Sweden,

Functional Area Speech and Language Pathology, Karolinska University Hospital, Stockholm, Sweden,

出版信息

Folia Phoniatr Logop. 2021;73(1):50-62. doi: 10.1159/000505063. Epub 2020 Jan 21.

DOI:10.1159/000505063
PMID:31962338
Abstract

PURPOSE

The aim of this study was to investigate self-reported cognition, speech, communication and swallowing changes in a large sample of individuals with multiple sclerosis (MS) in Sweden. A second aim was to update information about speech and language pathology (SLP) services received by people with MS (pwMS).

METHOD

Self-ratings of cognition, speech/communication and swallowing registered by pwMS between 2012 and 2018 were retrieved from the Swedish MS Registry. In addition, more detailed information about speech, communication, swallowing and provision of SLP services was collected using an online survey distributed via a national patient organization.

RESULTS

In total, entries from 5,289 pwMS were retrieved from the MS Registry. Nearly two thirds of the respondents reported that cognition was affected to some degree, whereas approximately one third perceived some difficulties with speech/communication. A smaller group reported swallowing problems. The majority of those who reported problems with speech/communication also reported problems with cognition. Among the 440 individuals who responded to the MS survey, word-finding difficulties were the most frequently self-reported problem related to communication, and the second most common problem was getting off topic. In all, close to four out of five respondents experienced at least one symptom related to speech and communication, such as speech-related fatigue or imprecise articulation. Swallowing difficulties were reported by one out of four respondents in the MS survey. As a result of their speech difficulties, up to one in three experienced changes in professional or social roles and participation. A limited number of respondents had received SLP services, the most common intervention being voice training.

CONCLUSIONS

In MS, changes associated with cognition as well as speech/communication are frequent, cognitive-linguistic symptoms being the most common. Swallowing difficulties are also relatively prevalent. Access to SLP services seems to be insufficient compared to prevalence of perceived symptoms. Considering that the majority of pwMS are part of the working-age population, access to SLP services must be more highly prioritized and must address cognitive-linguistic problems as well as voice, speech and swallowing dysfunction.

摘要

目的

本研究旨在调查瑞典大量多发性硬化症(MS)患者自我报告的认知、言语、交流和吞咽变化。第二个目的是更新关于多发性硬化症患者(pwMS)接受言语和语言病理学(SLP)服务的信息。

方法

从瑞典多发性硬化症登记处检索了 2012 年至 2018 年间 pwMS 自我评估的认知、言语/交流和吞咽功能。此外,还通过国家患者组织在线调查收集了关于言语、交流、吞咽和 SLP 服务提供的更详细信息。

结果

共从 MS 登记处检索到 5289 名 pwMS 的记录。近三分之二的受访者报告认知受到一定程度的影响,而约三分之一的受访者认为言语/交流存在某些困难。较小的群体报告存在吞咽问题。报告言语/交流有问题的大多数人也报告存在认知问题。在 440 名回应 MS 调查的人中,找词困难是最常见的与交流相关的自我报告问题,其次是离题。总的来说,近五分之四的受访者经历了至少一种与言语和交流相关的症状,例如言语相关的疲劳或发音不准确。在 MS 调查中,有四分之一的受访者报告存在吞咽困难。由于言语困难,多达三分之一的人经历了职业或社会角色和参与的变化。少数受访者接受了 SLP 服务,最常见的干预措施是语音训练。

结论

在多发性硬化症中,与认知以及言语/交流相关的变化很常见,认知语言症状最常见。吞咽困难也相对常见。与感知到的症状相比,获得 SLP 服务的机会似乎不足。考虑到大多数 pwMS 都属于劳动年龄人口,必须更加优先考虑获得 SLP 服务,并且必须解决认知语言问题以及语音、言语和吞咽功能障碍。

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