Allen-Philbey Kimberley, Middleton Rod, Tuite-Dalton Katie, Baker Elaine, Stennett Andrea, Albor Christo, Schmierer Klaus
Clinical Board Medicine (Neuroscience), The Royal London Hospital, Barts Health NHS Trust, London, United Kingdom.
UK MS Register, Swansea University Medical School, Swansea, United Kingdom.
Front Neurol. 2020 Jun 12;11:464. doi: 10.3389/fneur.2020.00464. eCollection 2020.
Technological innovation is transforming traditional clinical practice, enabling people with multiple sclerosis (pwMS) to contribute health care outcome data remotely between clinic visits. In both relapsing and progressive forms of multiple sclerosis (MS), patients may experience variable disability accrual and symptoms throughout their disease course. The potential impact on the quality of life (QoL) in pwMS and their families and carers is profound. The introduction of treatment targets, such as NEDA (no evidence of disease activity) and NEPAD (no evidence of progression or active disease), that guide clinical decision-making, highlight the importance of utilizing sensitive instruments to measure and track disease activity and progression. However, the gold standard neurological disability tool-expanded disability severity scale (EDSS)-has universally recognized limitations. With strides made in our understanding of MS pathophysiology and DMT responsiveness, maintaining the status quo of measuring disability progression is no longer the recommended option. Outside the clinical trial setting, a comprehensive monitoring system has not been robustly established for pwMS. A 21st-century approach is required to integrate clinical, paraclinical, and patient-reported outcome (PRO) data from electronic health records, local databases, and patient registries. Patient and public involvement (PPI) is critical in the design and implementation of this workflow. To take full advantage of the potential of digital technology in the monitoring and care and QoL of pwMS will require iterative feedback between pwMS, health care professionals (HCPs), scientists, and digital experts.
技术创新正在改变传统临床实践，使多发性硬化症患者（pwMS）能够在门诊就诊期间远程提供医疗保健结果数据。在复发型和进展型多发性硬化症（MS）中，患者在整个病程中可能会经历不同程度的残疾累积和症状。这对pwMS及其家人和护理人员的生活质量（QoL）可能产生深远影响。引入诸如无疾病活动证据（NEDA）和无进展或活动性疾病证据（NEPAD）等指导临床决策的治疗目标，凸显了使用敏感工具来测量和跟踪疾病活动及进展的重要性。然而，金标准神经功能残疾工具——扩展残疾状态量表（EDSS）——存在普遍公认的局限性。随着我们对MS病理生理学和疾病修正治疗（DMT）反应性的理解取得进展，维持测量残疾进展的现状已不再是推荐的选择。在临床试验环境之外，尚未为pwMS建立完善的综合监测系统。需要一种21世纪的方法来整合来自电子健康记录、本地数据库和患者登记处的临床、准临床和患者报告结局（PRO）数据。患者和公众参与（PPI）在该工作流程的设计和实施中至关重要。要充分利用数字技术在pwMS监测、护理和生活质量方面的潜力，需要pwMS、医疗保健专业人员（HCP）、科学家和数字专家之间进行反复反馈。
