Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?

Abstract

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.

Patient’s point of view on the use of telemedicine in multiple sclerosis: a web-based survey

“…The limited possibility of assessing neurological status during remote visit was, in fact, identified by the majority of the respondents as one the most important disadvantages of such approach. Several tools and methods are now available to overcome this barrier and improve teleneurology practice [14][15][16], but patients and neurologists need time to get familiar with them and increase the level of trust in these approaches [17].…”

Predictors of Health Utility in Relapsing–Remitting and Secondary-Progressive Multiple Sclerosis: Implications for Future Economic Models of Disease-Modifying Therapies

“…T25FW, 9HPT, Low Contrast Sloan Letter Chart (visual test), and the Symbol Digit Modalities Test (cognition test) have been proposed to monitor the progression of disability in clinical practice, as part of a multifactorial MS decision model (which also includes the domains of relapse, neuropsychology, and MRI findings), to support early treatment decisions and uncover treatment failure in clinical practice [80]. Advances in technology will also contribute to the relevance of endpoints such as the T25FW, 9HPT, and SDMT outside the clinical trial setting, enabling people with MS to contribute to healthcare outcomes and monitor their disability status remotely [79,[81][82][83]. With a potential increase in clinical trials using multiple disability endpoints and their growing relevance in clinical practice, the inclusion of additional disability endpoints in economic evaluations of DMTs for RRMS may also become more relevant.…”

“…Unlike the EDSS, endpoints such as the T25FW and other components of the MSFC have recently started to be used in clinical practice to objectively capture disability related to cognition, visual function, dexterity, and ambulation and to monitor disease status and response to DMTs [ 79 , 80 ]. The introduction of treatment targets in MS, such as ‘no evidence of disease activity’, to guide clinical decision making, have highlighted that the EDSS, relapse rates, and magnetic resonance imaging (MRI) markers may not be the exclusive and appropriate factors to systematically monitor people with MS in clinical practice, and that other sensitive tests are needed to measure and track disease activity and progression [ 80 , 81 ]. T25FW, 9HPT, Low Contrast Sloan Letter Chart (visual test), and the Symbol Digit Modalities Test (cognition test) have been proposed to monitor the progression of disability in clinical practice, as part of a multifactorial MS decision model (which also includes the domains of relapse, neuropsychology, and MRI findings), to support early treatment decisions and uncover treatment failure in clinical practice [ 80 ].…”

Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers

“…These approaches include self-monitoring via mobile health technologies, new (wearable) sensor systems like accelerometers, as well as extended and adapted electronic health records (EHR). All these efforts are aimed at preventing the disease from progressing unnoticed and unanswered [11].…”