Abstract

Multiple sclerosis (MS) is a chronic inflammatory, demyelinating, and neurodegenerative disease affecting the central nervous system (CNS) that is characterized by a variety of clinical manifestations, encompassing not only sensorimotor disability but also cognitive dysfunction, fatigue, pain, mood changes, sleep disturbances, and visual impairment. 1 These clinical manifestations exhibit substantial heterogeneity among patients but also within the same individual. The severity of MS symptoms can be highly variable even over a short time frame, fluctuating throughout days and weeks, as a consequence of several physiological, environmental, behavioral, and pathological factors.2–4
Even though variability in symptoms and their dynamic nature over time are associated with emotional distress arising from worries about uncertainty, 4 routine clinical evaluations inadequately account for the variability of MS-related clinical manifestations. In standard clinical assessments, patients are usually asked to quantify the presence of their symptoms during a single evaluation or to estimate their average symptoms over an extended period, spanning from weeks to months. This approach is susceptible to recall difficulties and potential confounding factors, such as concomitant mood disorders and comorbidities, seasonal changes, and daily-life activities.2–4
In recent years, there has been an increased focus on achieving a more accurate assessment of the variability of MS-related clinical manifestations.2–4 Specifically, ecological momentary assessments 5 have been proposed as a valuable approach for real-time evaluation of MS symptoms, including locomotor impairment, fatigue, mood disorders, and cognitive impairment.2–4,6,7 This is accomplished by prompting patients to report the severity of their symptom on a weekly, daily, or even hourly basis, or using remote health monitoring through devices equipped with sensors (i.e. mobile ecological momentary assessments).2–4,6,7 Such an approach has the potential to contribute to the assessment of day-to-day variability of symptoms and clinical disability and their possible associations, thus facilitating the direct examination of within-person dynamics and diurnal patterns of clinical manifestations. Ecological momentary assessments can also improve the understanding of the pathophysiological substrates of these symptoms and help implement optimized and tailored treatments for the variable clinical manifestations associated with MS. 7
Some concerns exist about the possibility that ecological momentary assessments may contribute to over-medicalization and to an excessive focus on MS symptoms by patients. However, it is crucial to acknowledge the multifaceted benefits that ecological momentary assessments bring to the management of MS patients.
One of the most relevant aims of MS care involves efforts to manage symptoms and preserve functioning. However, the ability to deliver tailored and optimized treatments is hindered by a limited understanding of the underlying nature of MS-related manifestations and their substantial variability. By collecting real-time data at multiple points throughout days and weeks, encompassing clinical features, environmental, and contextual factors, ecological momentary assessments provide a continuous, comprehensive, and dynamic view of a patient’s experiences, activities, emotions, and environmental influences. This approach may shed light on how MS-related clinical manifestations impact daily activities and overall quality of life. Moreover, by adopting a broader and more holistic perspective, ecological momentary assessment enables a better understanding of lifestyle, psychological, and social determinants of health that influence the severity and fluctuation of MS symptoms, significantly affecting the well-being of these patients. Since some of these factors are modifiable, ecological momentary assessments offer the opportunity to implement specific interventions, even not pharmacological, which could address some of the underlying causes of MS clinical manifestations, thus possibly reducing the risk of over-medicalization. Ecological momentary assessment can also capture the influence of potential triggers or detrimental factors for MS symptoms (e.g. specific behaviors, activities, comorbidities, etc.) that could be present from the earliest phases of the disease even when they have a limited impact on patients’ daily-life activities. This could potentially contribute to the development of early preventive strategies, again not solely based on pharmacologic intervention, thereby reducing the need for symptomatic treatments through the disease course.
Another pivotal aspect of ecological momentary assessments is their ability to collect personalized data. Instead of adopting a one-size-fits-all approach, ecological momentary assessments may customize treatments based on an individual’s unique condition and the fluctuation of symptoms over time, thus promoting tailored medical interventions. This is likely to enhance the effectiveness of interventions, minimize the risk of over-medicalization and potential treatment-related side effects, and reduce unnecessary healthcare costs, by avoiding unnecessary treatments that may not be suitable for every patient. With the use of ecological momentary assessments, each MS patient may also play an active role in self-monitoring, fostering a sense of control over his or her health. This empowerment can result in informed decision-making and lifestyle changes, decreasing the tendency for unnecessary medical treatment. Moreover, since the severity of specific symptoms may vary over time, symptomatic treatments may be used at variable doses over different days. Customizing drug dosages to individual needs might involve the patient directly in managing certain symptomatic therapies (i.e. myo-relaxants, anti-spastic drugs, anxiolytic therapies, or drugs for neuropathic pain), also promoting better compliance. Patients are indeed more likely to adhere to a treatment plan not only if they achieve better therapeutic outcomes and experience fewer side effects, but also if they are directly involved in therapy management, contributing to the overall success of the treatment. 8
In conclusion, ecological momentary assessments offer a nuanced and valuable approach that may move MS patients’ management toward a more balanced and patient-centric model aimed to optimize interventions based on real-time, personalized data, possibly reducing over-medications and promoting tailored and modulated therapies. Since the majority of current studies mainly evaluated small cohorts of MS patients and focused only on specific clinical manifestations, such as fatigue or locomotor function, future studies including larger cohorts of MS patients with a comprehensive assessment of clinical manifestations and longer follow-up are necessary to validate ecological momentary assessments and support their implementation in the clinical scenario.
Footnotes
Data Availability Statement
Data sharing not applicable to this article as no data sets were generated or analyzed during this study.
Declaration of Conflicting Interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: P.P. received speaker honoraria from Roche, Biogen, Novartis, Merck, Bristol Myers Squibb, and Sanofi; he has received research support from Italian Ministry of Health and Fondazione Italiana Sclerosi Multipla. M.A.R. received consulting fees from Biogen, Bristol Myers Squibb, Eli Lilly, Janssen, and Roche and speaker honoraria from AstraZaneca, Biogen, Bristol Myers Squibb, Bromatech, Celgene, Genzyme, Horizon Therapeutics Italy, Merck Serono SpA, Novartis, Roche, Sanofi, and Teva. She receives research support from the MS Society of Canada, the Italian Ministry of Health, the Italian Ministry of University and Research, and Fondazione Italiana Sclerosi Multipla. She is Associate Editor for Multiple Sclerosis and Related Disorders. M.F. is Editor-in-Chief of the Journal of Neurology, Associate Editor of Human Brain Mapping, Neurological Sciences, and Radiology; received compensation for consulting services from Alexion, Almirall, Biogen, Merck, Novartis, Roche, Sanofi; speaking activities from Bayer, Biogen, Celgene, Chiesi Italia SpA, Eli Lilly, Genzyme, Janssen, Merck Serono, Neopharmed Gentili, Novartis, Novo Nordisk, Roche, Sanofi, Takeda, and TEVA; participation in Advisory Boards for Alexion, Biogen, Bristol Myers Squibb, Merck, Novartis, Roche, Sanofi, Sanofi-Aventis, Sanofi-Genzyme, and Takeda; scientific direction of educational events for Biogen, Merck, Roche, Celgene, Bristol Myers Squibb, Lilly, Novartis, and Sanofi-Genzyme; he receives research support from Biogen Idec, Merck Serono, Novartis, Roche, the Italian Ministry of Health, the Italian Ministry of University and Research, and Fondazione Italiana Sclerosi Multipla.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
