Namsrai Tergel, Parkinson Anne, Burns Richard, Herkes Geoffrey, Elisha Mark, Chisholm Katrina, Drew Janet, Fanning Vanessa, Brüstle Anne, Suominen Hanna, Cherbuin Nicolas, Desborough Jane
National Centre for Epidemiology and Population Health, The Australian National University, Building 63A, Acton, ACT, 2601, Australia.
School of Medicine and Psychology, The Australian National University, Canberra, Australia.
Patient. 2025 Aug 29. doi: 10.1007/s40271-025-00759-1.
Fatigue is one of the most prevalent and debilitating symptoms of multiple sclerosis (MS), as people with MS describe it. It has a complex pathogenesis and often precedes the clinical symptoms of MS and potentially indicates disease progression. Given its prevalence, impact, and intricate connections to disease pathology, accurate measurement is crucial to manage and study fatigue in people with MS; however, current measurements often lack content validity. A mismatch between key aspects of fatigue and existing fatigue scales will limit these scales' ability to capture the full scope of MS-related fatigue. We aimed to examine the current evidence on MS-related fatigue to define key aspects of fatigue in the literature and compare them with the scales used to measure MS-related fatigue.
This integrated rapid review (PROSPERO registration: CRD42024505743) synthesised evidence on MS-related fatigue domains and their representation in validated scales. A systematic search was conducted on January 24, 2024, across three electronic databases: PubMed, Scopus, and ProQuest with no restriction on publication date. Eligible studies included those reporting on fatigue domains, signs and symptoms in people with MS and those on validated fatigue scales in MS. The quality of the included studies was assessed using the Mixed Methods Assessment Tool. Data was synthesised with meta-aggregation of the fatigue domains, signs, and symptoms and mapping them against the items from validated fatigue scales.
We identified 7089 articles and included 85 studies (quantitative: 65; qualitative: 9; mixed methods: 8); 54 investigated fatigue domains, five reported fatigue scale development, and 26 focused on both. The review included 34,984 participants (9814 male; 25,126 female) with a mean age of 47.43 years (range 36-55.4). A total of 791 items related to fatigue domains, signs, symptoms, and experiences were extracted and categorised into three key areas: fatigue triggers, domains, and impacts. We identified eight fatigue triggers (physical, cognitive, psychological, social, medical, lifestyle, temporal, and environmental), five fatigue domains (general, physical, cognitive, psychosocial, and social), and five areas of fatigue impact (global, physical, cognitive, psychological, and social impacts of fatigue). Twenty-nine scales, tests, measures, and indices that measure MS-related fatigue were identified. Nineteen of these were validated by self-reported fatigue scales. The scales fully covered the domains of MS-related fatigue. However, the identified scales did not fully capture medical and lifestyle triggers, as well as psychological and global impacts. Additionally, no single scale fully encompassed all three aspects of fatigue and their corresponding subcategories.
This review demonstrates the importance of integrating the subjective experiences of people with MS into research to ensure that the multidimensional aspects of MS-related fatigue, together with these people's values, needs, and preferences, are captured and used to develop useful, comprehensive, and meaningful tools designed to measure MS-related fatigue. In addition, this clearer discernment of the triggers, domains, and impacts of MS-related fatigue is critical in the clinic and research. Better tools will enable a better understanding of the underlying mechanisms, as well as tracking and managing fatigue.
正如多发性硬化症(MS)患者所描述的那样,疲劳是MS最常见且使人衰弱的症状之一。它具有复杂的发病机制,通常先于MS的临床症状出现,并可能预示疾病进展。鉴于其普遍性、影响以及与疾病病理的复杂联系,准确测量对于管理和研究MS患者的疲劳至关重要;然而,目前的测量方法往往缺乏内容效度。疲劳的关键方面与现有疲劳量表之间的不匹配将限制这些量表全面捕捉与MS相关疲劳的能力。我们旨在研究当前关于与MS相关疲劳的证据,以确定文献中疲劳的关键方面,并将其与用于测量与MS相关疲劳的量表进行比较。
本综合快速综述(PROSPERO注册号:CRD42024505743)综合了关于与MS相关疲劳领域及其在有效量表中的体现的证据。于2024年1月24日在三个电子数据库(PubMed、Scopus和ProQuest)上进行了系统检索,对出版日期无限制。符合条件的研究包括那些报告MS患者疲劳领域、体征和症状的研究,以及那些关于MS中有效疲劳量表的研究。使用混合方法评估工具评估纳入研究的质量。通过对疲劳领域、体征和症状进行元聚合并将其与有效疲劳量表中的项目进行映射来综合数据。
我们识别出7089篇文章,纳入了85项研究(定量研究:65项;定性研究:9项;混合方法研究:8项);54项研究调查了疲劳领域,5项报告了疲劳量表的开发,26项则两者兼顾。该综述纳入了34984名参与者(男性9814名;女性25126名),平均年龄为47.43岁(范围36 - 55.4岁)。总共提取了791项与疲劳领域、体征、症状及体验相关的内容,并将其归为三个关键领域:疲劳诱因、领域和影响。我们确定了八个疲劳诱因(身体、认知、心理、社会、医疗、生活方式、时间和环境)、五个疲劳领域(一般、身体、认知、心理社会和社会)以及五个疲劳影响领域(疲劳的整体、身体、认知、心理和社会影响)。识别出了29种测量与MS相关疲劳的量表、测试、测量方法和指标。其中19种通过自我报告疲劳量表进行了验证。这些量表完全涵盖了与MS相关疲劳的领域。然而,所识别的量表并未完全捕捉到医疗和生活方式诱因,以及心理和整体影响。此外,没有一个量表能完全涵盖疲劳的所有三个方面及其相应子类别。
本综述表明,将MS患者的主观体验纳入研究非常重要,以确保捕捉到与MS相关疲劳的多维度方面以及这些患者的价值观、需求和偏好,并用于开发有用、全面且有意义的工具来测量与MS相关的疲劳。此外,对与MS相关疲劳的诱因、领域和影响进行更清晰的辨别在临床和研究中至关重要。更好的工具将有助于更好地理解潜在机制,以及跟踪和管理疲劳。