Walton Centre NHS Trust, Liverpool, UK; University of Liverpool, UK,.
Manchester Centre for Clinical Neurosciences, Salford Royal NHS Foundation Trust, UK.
J Neurol Sci. 2021 Jul 15;426:117437. doi: 10.1016/j.jns.2021.117437. Epub 2021 Apr 9.
Quality of life in multiple sclerosis (MS) reflects complex relationships between symptoms (fatigue, spasticity pain, and bladder or vision dysfunction), disability, health perceptions, and self-efficacy.
In this cross-sectional study, a self-report questionnaire pack of patient reported outcome measures was collected from 5695 people with MS (pwMS) alongside clinical data from their neurologists. Each patient reported outcome measure was converted to interval-scaled estimates following fit to the Rasch model. The patient reported outcome measures, as well as perceived health, age, disease subtype and gender, were then subject to path analysis to analyse their relationships with quality of life (QoL), guided by the Wilson and Clearly conceptual framework.
The final model explains 81.2% of the variance of QoL. Fatigue is clearly dominant, suggesting a means to intervene and improve QoL. The next most influential factors were disability and self-efficacy, which have similar effect levels. The model can be replicated for pwMS on disease modifying therapy and is largely invariant for gender and disease subtype. Age had an insignificant effect.
In order to promote better QoL, MS care should include management of fatigue, interventions to ameliorate disability, and support to enhance self-efficacy. The range of skills needed for these treatments will require input from medical, nursing, therapy and psychology staff, so these findings provide evidence substantiating the need for pwMS to be provided with care by comprehensive multidisciplinary teams.
多发性硬化症（MS）患者的生活质量反映了症状（疲劳、痉挛性疼痛、膀胱或视力功能障碍）、残疾、健康感知和自我效能之间的复杂关系。
在这项横断面研究中，从 5695 名 MS 患者（pwMS）中收集了一份自我报告问卷包，以及他们的神经科医生提供的临床数据。每个患者报告的结果测量值都根据适应 Rasch 模型转换为区间标度估计值。然后，根据 Wilson 和 Clearly 的概念框架，对患者报告的结果测量值以及感知健康、年龄、疾病亚型和性别进行路径分析，以分析它们与生活质量（QoL）的关系。
最终模型解释了 QoL 变异的 81.2%。疲劳显然是主要因素，表明有干预和改善 QoL 的方法。下一个最有影响力的因素是残疾和自我效能，它们具有相似的影响水平。该模型可复制用于接受疾病修正治疗的 pwMS，且在性别和疾病亚型方面基本不变。年龄的影响不显著。
为了提高生活质量，MS 护理应包括疲劳管理、改善残疾的干预措施以及增强自我效能的支持。这些治疗所需的一系列技能将需要医学、护理、治疗和心理专业人员的投入，因此这些发现为 pwMS 需要由多学科综合团队提供护理提供了证据支持。
