The Interactive Web-Based Program MSmonitor for Self-Management and Multidisciplinary Care in Persons With Multiple Sclerosis: Quasi-Experimental Study of Short-Term Effects on Patient Empowerment

Jongen, Peter Joseph; Veen, Gezien ter; Lemmens, W.A.J.G.; Donders, Rogier; Noort, Esther van; Zeinstra, Esther

doi:10.2196/14297

Cited by 13 publications

(22 citation statements)

References 54 publications

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“…While a number of studies have used web-based tools to collect MS health data through patient diaries and electronic PROs [20,21], there is a growing need to tailor these digital health tools to the needs of patients with MS; this includes developing sensor-based assessments of MS disease severity and evaluating the impact of environmental factors, such as weather, stress, and sleep impairment on MS burden [22,23]. By bridging the gap between episodic clinical observation and the real-world experience of MS, these digital tools have the potential to improve self-reporting and disease monitoring, and provide a more comprehensive assessment of disease trajectories.…”

Section: Patient Monitoring and Digital Toolsmentioning

confidence: 99%

Evaluating the Utility of Smartphone-Based Sensor Assessments in Persons With Multiple Sclerosis in the Real-World Using an App (elevateMS): Observational, Prospective Pilot Digital Health Study

Pratap¹,

Grant²,

Vegesna³

et al. 2020

JMIR Mhealth Uhealth

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Background Multiple sclerosis (MS) is a chronic neurodegenerative disease. Current monitoring practices predominantly rely on brief and infrequent assessments, which may not be representative of the real-world patient experience. Smartphone technology provides an opportunity to assess people’s daily-lived experience of MS on a frequent, regular basis outside of episodic clinical evaluations. Objective The objectives of this study were to evaluate the feasibility and utility of capturing real-world MS-related health data remotely using a smartphone app, “elevateMS,” to investigate the associations between self-reported MS severity and sensor-based active functional tests measurements, and the impact of local weather conditions on disease burden. Methods This was a 12-week, observational, digital health study involving 3 cohorts: self-referred participants who reported an MS diagnosis, clinic-referred participants with neurologist-confirmed MS, and participants without MS (controls). Participants downloaded the elevateMS app and completed baseline assessments, including self-reported physical ability (Patient-Determined Disease Steps [PDDS]), as well as longitudinal assessments of quality of life (Quality of Life in Neurological Disorders [Neuro-QoL] Cognitive, Upper Extremity, and Lower Extremity Function) and daily health (MS symptoms, triggers, health, mobility, pain). Participants also completed functional tests (finger-tapping, walk and balance, voice-based Digit Symbol Substitution Test [DSST], and finger-to-nose) as an independent assessment of MS-related cognition and motor activity. Local weather data were collected each time participants completed an active task. Associations between self-reported baseline/longitudinal assessments, functional tests, and weather were evaluated using linear (for cross-sectional data) and mixed-effects (for longitudinal data) regression models. Results A total of 660 individuals enrolled in the study; 31 withdrew, 495 had MS (n=359 self-referred, n=136 clinic-referred), and 134 were controls. Participation was highest in clinic-referred versus self-referred participants (median retention: 25.5 vs 7.0 days). The top 5 most common MS symptoms, reported at least once by participants with MS, were fatigue (310/495, 62.6%), weakness (222/495, 44.8%), memory/attention issues (209/495, 42.2%), and difficulty walking (205/495, 41.4%), and the most common triggers were high ambient temperature (259/495, 52.3%), stress (250/495, 50.5%), and late bedtime (221/495, 44.6%). Baseline PDDS was significantly associated with functional test performance in participants with MS (mixed model–based estimate of most significant feature across functional tests [β]: finger-tapping: β=–43.64, P<.001; DSST: β=–5.47, P=.005; walk and balance: β=–.39, P=.001; finger-to-nose: β=.01, P=.01). Longitudinal Neuro-QoL scores were also significantly associated with functional tests (finger-tapping with Upper Extremity Function: β=.40, P<.001; walk and balance with Lower Extremity Function: β=–99.18, P=.02; DSST with Cognitive Function: β=1.60, P=.03). Finally, local temperature was significantly associated with participants’ test performance (finger-tapping: β=–.14, P<.001; DSST: β=–.06, P=.009; finger-to-nose: β=–53.88, P<.001). Conclusions The elevateMS study app captured the real-world experience of MS, characterized some MS symptoms, and assessed the impact of environmental factors on symptom severity. Our study provides further evidence that supports smartphone app use to monitor MS with both active assessments and patient-reported measures of disease burden. App-based tracking may provide unique and timely real-world data for clinicians and patients, resulting in improved disease insights and management.

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Section: Patient Monitoring and Digital Toolsmentioning

confidence: 99%

Evaluating the Utility of Smartphone-Based Sensor Assessments in Persons With Multiple Sclerosis in the Real-World Using an App (elevateMS): Observational, Prospective Pilot Digital Health Study

Pratap¹,

Grant²,

Vegesna³

et al. 2020

JMIR Mhealth Uhealth

View full text Add to dashboard Cite

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“…The remaining six articles were included in this scoping review. 40 , 41 , 42 , 43 , 44 , 45 The PRISMA flow diagram highlighting the study selection process can be found in Fig. 1 .…”

Section: Resultsmentioning

confidence: 99%

“… 40 , 41 , 42 , 43 , 44 , 45 One study had open text in the survey to gain qualitative input from participants. 40 Quantitative study designs included randomized controlled trials ( n = 2), 43 , 45 multi-methods with two phases including a cross-sectional component and retrospective cohort component ( n = 1), 44 prospective quasi-experimental study (n = 1), 42 and an observational cross-sectional study (n = 1). 40 Studies were conducted in four countries: the Netherlands ( n = 3), 40 , 41 , 42 Iran (n = 1), 44 Germany (n = 1), 45 and the United States (n = 1).…”

Section: Resultsmentioning

confidence: 99%

Medication self-management toolkits for adults with multiple sclerosis: A scoping review

Guilcher

Cadel

et al. 2023

Exploratory Research in Clinical and Social Pharmacy

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“…As noted in the introduction, there are currently few mobile apps for fatigue management in MS. A review of mHealth in MS by Gromisch et al [ 66 ] identified 3 mHealth-based apps and 1 web-based platform that promote fatigue self-management through a variety of approaches [ 66 ]. These include cognitive behavior therapy principles (MS Energise, which draws upon the FACETS program [ 30 - 32 ]), gamification of energy management via stamina credits (More Stamina [ 67 , 68 ]), and use of validated self-assessments and medication and activity diaries (MSMonitor; web-based platform) [ 69 ]. One app (MS Telecoach) focuses on increasing physical activity levels via telemonitoring (accelerometers and self-reported fatigue) and telecoaching (advice, motivational messages, and goal setting) [ 70 ].…”

Section: Discussionmentioning

confidence: 99%

Creating a Digital Toolkit to Reduce Fatigue and Promote Quality of Life in Multiple Sclerosis: Participatory Design and Usability Study

Thomas¹,

Pulman²,

Doğan³

et al. 2021

JMIR Form Res

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Background Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS), experienced by more than 80% of people with MS. FACETS (Fatigue: Applying Cognitive Behavioral and Energy Effectiveness Techniques to Lifestyle) is an evidence-based, face-to-face, 6-session group fatigue management program for people with MS. Homework tasks are an integral part of FACETS and are currently undertaken in a paper-based form. Feedback from a consultation undertaken with FACETS attendees and health care professionals with experience in delivering the FACETS program suggested that being able to complete the homework tasks digitally would be desirable, potentially enhancing engagement and adherence and enabling on-the-go access to fit into busy lifestyles. Relative to other long-term conditions, there are few apps specifically for MS and, of those available, many have been developed with little or no input from people with MS. Objective The purpose of this mixed methods study was to create a digital toolkit comprising the homework tasks (eg, activity diary, goal planner, thought diary) of the FACETS program for people with MS, considering end users’ unique requirements throughout the design, build, prototyping, and testing stages. Methods Phase 1 involved the elicitation of detailed user requirements for the toolkit via 2 focus groups with previous attendees of FACETS (n=3 and n=6) and wireframing. Phase 2 involved supervised usability testing with people with MS (n=11) with iterative prototyping. The usability sessions involved going through test scenarios using the FACETS toolkit on an Android test phone with video capture and concurrent think-aloud followed by completion of the System Usability Scale (SUS) and a semistructured interview collecting feedback about design, content, and functionality. Results The mean SUS score for the digital toolkit was 74.3 (SD 16.8, 95% CI 63.2-85.6; range 37.5-95), which equates to an adjective rating of good and a B grade (70th-79th percentile range) on the Sauro-Lewis curved grading scale. A number of usability and design issues (such as simplifying overall screen flow to better meet users’ needs) and suggestions for improvements (such as using location-based services and displaying personalized information and progress via a central dashboard) were addressed and implemented during the usability testing cycle. Conclusions This work highlights the importance of the participation of people with MS across the entire development cycle, working to a human-centered design methodology to enable a considered and MS-centered solution to be developed. Continued horizon scanning for emergent technological enhancements will enable us to identify opportunities for further improvements to the FACETS toolkit prior to launch. The toolkit supports self-monitoring and management of fatigue and has potential applicability to other long-term conditions where fatigue is a significant issue.

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The Interactive Web-Based Program MSmonitor for Self-Management and Multidisciplinary Care in Persons With Multiple Sclerosis: Quasi-Experimental Study of Short-Term Effects on Patient Empowerment

Cited by 13 publications

References 54 publications

Evaluating the Utility of Smartphone-Based Sensor Assessments in Persons With Multiple Sclerosis in the Real-World Using an App (elevateMS): Observational, Prospective Pilot Digital Health Study

Evaluating the Utility of Smartphone-Based Sensor Assessments in Persons With Multiple Sclerosis in the Real-World Using an App (elevateMS): Observational, Prospective Pilot Digital Health Study

Medication self-management toolkits for adults with multiple sclerosis: A scoping review

Creating a Digital Toolkit to Reduce Fatigue and Promote Quality of Life in Multiple Sclerosis: Participatory Design and Usability Study

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