Mobile health (mHealth) usage, barriers, and technological considerations in persons with multiple sclerosis: a literature review

Gromisch, Elizabeth S.; Turner, Aaron P.; Haselkorn, Jodie K.; Lo, Albert; Agresta, Thomas

doi:10.1093/jamiaopen/ooaa067

Cited by 23 publications

(29 citation statements)

References 82 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…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 ].…”

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

View full text Add to dashboard Cite

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.

show abstract

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

View full text Add to dashboard Cite

show abstract

“…There are multiple examples of tools that were considered useful prior to roll-out but failed to be adopted in any meaningful way. There could be a variety of reasons for this, including poor usability (usually due to not involving relevant clinicians or patients in the development of the tool) and lack of appropriate dissemination [ 53 , 54 ]. Such potential barriers were considered throughout the development of the MSProDiscuss tool, with the long-term aim of promoting adoption.…”

Section: Barriers To Clinical Adoption Of Digital Cds Toolsmentioning

confidence: 99%

MSProDiscuss™ Clinical Decision Support Tool for Identifying Multiple Sclerosis Progression

Ziemssen

Vandercappellen

Mondragon

et al. 2022

JCM

View full text Add to dashboard Cite

This article describes the rationale for the development of the MSProDiscuss™ clinical decision support (CDS) tool, its development, and insights into how it can help neurologists improve care for patients with multiple sclerosis (MS). MS is a progressive disease characterized by heterogeneous symptoms and variable disease course. There is growing consensus that MS exists on a continuum, with overlap between relapsing–remitting and secondary progressive phenotypes. Evidence demonstrates that neuroaxonal loss occurs from the outset, that progression can occur independent of relapse activity, and that continuous underlying pathological processes may not be reflected by inflammatory activity indicative of the patient’s immune response. Early intervention can benefit patients, and there is a need for a tool that assists physicians in rapidly identifying subtle signs of MS progression. MSProDiscuss, developed with physicians and patients, facilitates a structured approach to patient consultations. It analyzes multidimensional data via an algorithm to estimate the likelihood of progression (the MSProDiscuss score), the contribution of various symptoms, and the impact of symptoms on daily living, enabling a more personalized approach to treatment and disease management. Data from CDS tools such as MSProDiscuss offer new insights into disease course and facilitate informed decision-making and a holistic approach to MS patient care.

show abstract

“…7 COVID-19 seems to have had a negative effect on cognition-related services, primarily due to decreased face-to-face services and reduced access to services. Although remote-based testing has been shown to be feasible in MS [17][18][19][20] and there is growing utilization of mobile health tools for cognitive evaluations and training, 21 clinicians and patients may experience barriers that…”

Section: O N L I N E F I R S Tmentioning

confidence: 99%

“…Besides ensuring that the assessment is being performed in a secure location with a strong internet connection, clinicians may consider brief trainings with the device if the patient is unfamiliar with it and making adjustments to improve ease-of-use (eg, larger text if there are visual impairments). 21 Although this study has several strengths, such as the inclusion of multiple professions, an evaluation of changes during the past decade, and the influence of COVID-19 on services, there are limitations to consider. Despite multiple recruitment efforts, only 56 clinicians participated, representing slightly more than a quarter of the sample size of the 2010 survey 8 and less than 3% of the current CMSC membership.…”

Section: O N L I N E F I R S Tmentioning

confidence: 99%

Managing Cognitive Dysfunction in Multiple Sclerosis: A Snapshot of Changes in Screening, Assessment, and Treatment Practices

Gromisch

DeLuca

Benedict

et al. 2021

International Journal of MS Care

Self Cite

View full text Add to dashboard Cite

Background: Cognitive dysfunction is prevalent in multiple sclerosis (MS) and can have a negative effect on several aspects of the daily lives of persons with MS. In 2010, members of the Consortium of Multiple Sclerosis Centers (CMSC) were surveyed to understand MS clinicians’ screening, assessment, and treatment practices for cognitive problems. Given the advancements made in the field in the past decade, it was deemed time to reevaluate how cognitive dysfunction is managed in the clinical setting. Methods: An online questionnaire was completed by 56 CMSC members in which they were asked to describe their clinical practices, procedures for screening and further evaluation, and treatment recommendations for cognitive dysfunction. Participants were also asked whether their practice had changed in terms of the number of cognitive screenings, prescriptions for cognitive problems, and referrals for neuropsychological assessment and cognitive remediation in the past 5 years to allow for clinicians who had not been in practice for 10 years. Results: Participants reported an increase in the number of cognitive screenings and referrals for neuropsychological assessments and cognitive remediation during the past 5 years. Compared with 2010, participants endorsed greater use of person-administered screening measures, such as the Symbol Digit Modalities Test, and fewer prescriptions for medications to improve cognitive functioning. Conclusions: Clinical practices are becoming more in line with the literature, with increased use of cognitive screening and remediation. Continued attention to cognitive problems will be an ongoing important component of MS-related care.

show abstract

Mobile health (mHealth) usage, barriers, and technological considerations in persons with multiple sclerosis: a literature review

Cited by 23 publications

References 82 publications

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

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

MSProDiscuss™ Clinical Decision Support Tool for Identifying Multiple Sclerosis Progression

Managing Cognitive Dysfunction in Multiple Sclerosis: A Snapshot of Changes in Screening, Assessment, and Treatment Practices

Contact Info

Product

Resources

About