The Role of Remote Monitoring in Evaluating Fatigue in Multiple Sclerosis: A Review

Block, Valerie J; Bove, Riley; Nourbakhsh, Bardia

doi:10.3389/fneur.2022.878313

Cited by 12 publications

(10 citation statements)

References 93 publications

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“…Throughout the study, HCPs expressed optimism about the opportunities provided by a mHealth solution like the More Stamina app to gain a better understanding of their patients, particularly regarding factors influencing fatigue, a prevalent and debilitating symptom of MS. 27 This finding aligns with recent research in MS, which has shown that employing mHealth solutions can enable HCPs to understand patients' fatigue levels and their response to treatment. 43 The validation of the habits and lifestyle being the most useful types of PGHD for HCPs relates to the principle of precision medicine, where care is personalized based on individual variability, including factors such as the patient's environment and lifestyle. 44 These factors can provide context to clinical data and facilitate communication and care.…”

Section: Discussionmentioning

confidence: 99%

An Exploratory Study on the Utility of Patient-Generated Health Data as a Tool for Health Care Professionals in Multiple Sclerosis Care

Guardado,

Mylonopoulou,

Rivera-Romero

et al. 2023

Methods Inf Med

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Background Patient-generated health data (PGHD) are data collected through technologies such as mobile devices and health apps. The integration of PGHD into health care workflows can support the care of chronic conditions such as multiple sclerosis (MS). Patients are often willing to share data with health care professionals (HCPs) in their care team; however, the benefits of PGHD can be limited if HCPs do not find it useful, leading patients to discontinue data tracking and sharing eventually. Therefore, understanding the usefulness of mobile health (mHealth) solutions, which provide PGHD and serve as enablers of the HCPs' involvement in participatory care, could motivate them to continue using these technologies. Objective The objective of this study is to explore the perceived utility of different types of PGHD from mHealth solutions which could serve as tools for HCPs to support participatory care in MS. Method A mixed-methods approach was used, combining qualitative research and participatory design. This study includes three sequential phases: data collection, assessment of PGHD utility, and design of data visualizations. In the first phase, 16 HCPs were interviewed. The second and third phases were carried out through participatory workshops, where PGHD types were conceptualized in terms of utility. Results The study found that HCPs are optimistic about PGHD in MS care. The most useful types of PGHD for HCPs in MS care are patients' habits, lifestyles, and fatigue-inducing activities. Although these subjective data seem more useful for HCPs, it is more challenging to visualize them in a useful and actionable way. Conclusion HCPs are optimistic about mHealth and PGHD as tools to further understand their patients' needs and support care in MS. HCPs from different disciplines have different perceptions of what types of PGHD are useful; however, subjective types of PGHD seem potentially more useful for MS care.

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Section: Discussionmentioning

confidence: 99%

An Exploratory Study on the Utility of Patient-Generated Health Data as a Tool for Health Care Professionals in Multiple Sclerosis Care

Guardado,

Mylonopoulou,

Rivera-Romero

et al. 2023

Methods Inf Med

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“…Not only apps measuring fatigue through questionnaires but also wearable devices have proved to be useful in the continuous monitoring of fatigued MS patients (Sparaco et al, 2018 ; Tong et al, 2019 ; Block et al, 2022 ). These “health technologies” usually have an internet or smartphone connection and therefore allow non-stop collection of data about physiological parameters (e.g., heart rate, sleep levels) and track any kind of physical activities through accelerometers and sensors (Sparaco et al, 2018 ).…”

Section: The Concept Of Digital Assessment and Management Of Multiple...mentioning

confidence: 99%

Management of multiple sclerosis fatigue in the digital age: from assessment to treatment

Pinarello,

Elmers,

Inojosa

et al. 2023

Front. Neurosci.

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Fatigue is one of the most disabling symptoms of Multiple Sclerosis (MS), affecting more than 80% of patients over the disease course. Nevertheless, it has a multi-faceted and complex nature, making its diagnosis, evaluation, and treatment extremely challenging in clinical practice. In the last years, digital supporting tools have emerged to support the care of people with MS. These include not only smartphone or table-based apps, but also wearable devices or novel techniques such as virtual reality. Furthermore, an additional effective and cost-efficient tool for the therapeutic management of people with fatigue is becoming increasingly available. Virtual reality and e-Health are viable and modern tools to both assess and treat fatigue, with a variety of applications and adaptability to patient needs and disability levels. Most importantly, they can be employed in the patient's home setting and can not only bridge clinic visits but also be complementary to the monitoring and treatment means for those MS patients who live far away from healthcare structures. In this narrative review, we discuss the current knowledge and future perspectives in the digital management of fatigue in MS. These may also serve as sources for research of novel digital biomarkers in the identification of disease activity and progression.

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Section: Introductionmentioning

confidence: 99%

“…Infrequent and intermittent monitoring as provided at office visits may not truly reflect the day-to-day functioning and quality of life of patients living with MS [2]. Persons with MS may also have recall bias when reporting symptoms to their neurologist [2]. Additionally, symptoms in MS can fluctuate depending on fatigue, mood, and weather; thus, the cross-sectional nature of the information obtained from an individual clinic visit may be of limited accuracy compared with trends in symptoms over time [3,4].…”

Section: Introductionmentioning

confidence: 99%

Remote Testing Apps for Multiple Sclerosis Patients: Scoping Review of Published Articles and Systematic Search and Review of Public Smartphone Apps

Michaud¹,

Penny²,

Cull³

et al. 2023

JMIR Neurotech

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Background Many apps have been designed to remotely assess clinical status and monitor symptom evolution in persons with multiple sclerosis (MS). These may one day serve as an adjunct for in-person assessment of persons with MS, providing valuable insight into the disease course that is not well captured by cross-sectional snapshots obtained from clinic visits. Objective This study sought to review the current literature surrounding apps used for remote monitoring of persons with MS. Methods A scoping review of published articles was conducted to identify and evaluate the literature published regarding the use of apps for monitoring of persons with MS. PubMed/Medline, EMBASE, CINAHL, and Cochrane databases were searched from inception to January 2022. Cohort studies, feasibility studies, and randomized controlled trials were included in this review. All pediatric studies, single case studies, poster presentations, opinion pieces, and commentaries were excluded. Studies were assessed for risk of bias using the Scottish Intercollegiate Guidelines Network, when applicable. Key findings were grouped in categories (convergence to neurological exam, feasibility of implementation, impact of weather, and practice effect), and trends are presented. In a parallel systematic search, the Canadian Apple App Store and Google Play Store were searched to identify relevant apps that are available but have yet to be formally studied and published in peer-reviewed publications. Results We included 18 articles and 18 apps. Although many MS-related apps exist, only 10 apps had published literature supporting their use. Convergence between app-based testing and the neurological exam was examined in 12 articles. Most app-based tests focused on physical disability and cognition, although other domains such as ambulation, balance, visual acuity, and fatigue were also evaluated. Overall, correlations between the app versions of standardized tests and their traditional counterparts were moderate to strong. Some novel app-based tests had a stronger correlation with clinician-derived outcomes than traditional testing. App-based testing correlated well with the Multiple Sclerosis Functional Composite but less so with the Expanded Disability Status Scale; the latter correlated to a greater extent with patient quality of life questionnaire scores. Conclusions Although limited by a small number of included studies and study heterogeneity, the findings of this study suggest that app-based testing demonstrates adequate convergence to traditional in-person assessment and may be used as an adjunct to and perhaps in lieu of specific neurological exam metrics documented at clinic visits, particularly if the latter is not readily accessible for persons with MS.

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The Role of Remote Monitoring in Evaluating Fatigue in Multiple Sclerosis: A Review

Cited by 12 publications

References 93 publications

An Exploratory Study on the Utility of Patient-Generated Health Data as a Tool for Health Care Professionals in Multiple Sclerosis Care

An Exploratory Study on the Utility of Patient-Generated Health Data as a Tool for Health Care Professionals in Multiple Sclerosis Care

Management of multiple sclerosis fatigue in the digital age: from assessment to treatment

Remote Testing Apps for Multiple Sclerosis Patients: Scoping Review of Published Articles and Systematic Search and Review of Public Smartphone Apps

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