Project

More Stamina: digital health solutions for persons with Multiple Sclerosis

Goal: More Stamina is a research project whose aim is to explore ways in which new technologies can be used to improve healthcare and the quality of life of persons with Multiple Sclerosis.

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Project log

Guido Giunti
added a research item
Background: Multiple sclerosis (MS) is one of the world's most common neurologic disorders leading to severe disability in young adults. MS-related fatigue directly impacts on the quality of life and activity levels of people with MS. Self-management strategies are used to support them in the care of their health. Mobile health (mHealth) solutions can offer tools to help symptom management. Following a user-centered design and evidence-based process, an mHealth solution called More Stamina was created to help persons with MS manage their fatigue. Objective: The overall study aims are to explore the feasibility, acceptability, and usability of More Stamina, a mobile app for fatigue self-management for persons with MS. Methods: A mixed-methods, multicenter study will be used to assess the feasibility, acceptability, and usability of More Stamina. The study will take place during the third and fourth quarters of 2020 (Q3-Q4 2020) in 3 locations: Argentina, Spain, and Switzerland. A longitudinal cohort study will take place, and think-aloud protocols, open-ended interviews, and short answer questionnaires will be used. Persons with MS will be recruited from the different locations. This study seeks to enroll at least 20 patients that meet the criteria from each site for the longitudinal cohort study (total n=60). Results: Ethical approval has been granted in Argentina and is pending in Spain and Switzerland. Outcomes will be published in peer-reviewed medical journals and presented at international conferences. Conclusions: Findings from this study will be used to help understand the role that mHealth can play in fatigue management in MS. Trial registration: ClinicalTrials.gov NCT04244214; https://clinicaltrials.gov/ct2/show/NCT04244214. International registered report identifier (irrid): PRR1-10.2196/18196.
Guido Giunti
added a research item
Background and objective: Social media could be valuable tools to support people with multiple sclerosis (MS). There is little evidence on the MS-related topics that are discussed on social media, and the sentiment linked to these topics. The objective of this work is to identify the MS-related main topics discussed on Twitter, and the sentiment linked to them. Methods: Tweets dealing with MS in the English language were extracted. Latent-Dirilecht Allocation (LDA) was used to identify the main topics discussed in these tweets. Iterative inductive process was used to group the tweets into recurrent topics. The sentiment analysis of these tweets was performed using SentiStrength. Results: LDA' identified topics were grouped into 4 categories, tweets dealing with: related chronic conditions; condition burden; disease-modifying drugs; and awareness-raising. Tweets on condition burden and related chronic conditions were the most negative (p<0.001). A significant lower positive sentiment was found for both tweets dealing with disease-modifying drugs, condition burden, and related chronic conditions (p<0.001). Only tweets on awareness-raising were most positive than the average (p<0.001). Discussion: The use of both tools to identify the main discussed topics on social media and to analyse the sentiment of these topics, increases the knowledge of the themes that could represent the bigger burden for persons affected with MS. This knowledge can help to improve support and therapeutic approaches addressed to them.
Guido Giunti
added a research item
Increasing lifespans for chronic disease sufferers means a population of young patients who require lifestyle intervention from an early age. For multiple sclerosis (MS) patients, social problems begin with the decline of cognitive skills and their quality of life is affected. In this workshop, organizers will propose participants to work on different gamification design approachs to solve MS patients' engagement problem. Participants will obtain skills that can be extrapolated to other conditions that require patients change to adopt a different behavior. At the end, participants will present their proposed gamification design and discuss and comment each solution, assessing potential unintended outcomes and advantages.
Guido Giunti
added 5 research items
Background: Chronic conditions are the leading cause of death in the world. Major improvements in acute care and diagnostics have created a tendency toward the chronification of formerly terminal conditions, requiring people with these conditions to learn how to self-manage. Mobile technologies hold promise as self-management tools due to their ubiquity and cost-effectiveness. The delivery of health-related services through mobile technologies (mobile health, mHealth) has grown exponentially in recent years. However, only a fraction of these solutions take into consideration the views of relevant stakeholders such as health care professionals or even patients. The use of behavioral change models (BCMs) has proven important in developing successful health solutions, yet engaging patients remains a challenge. There is a trend in mHealth solutions called gamification that attempts to use game elements to drive user behavior and increase engagement. As it stands, designers of mHealth solutions for behavioral change in chronic conditions have no clear way of deciding what factors are relevant to consider. Objective: The goal of this work is to discover factors for the design of mHealth solutions for chronic patients using negotiations between medical knowledge, BCMs, and gamification. Methods: This study uses an embedded case study research methodology consisting of 4 embedded units: 1) cross-sectional studies of mHealth applications; 2) statistical analysis of gamification presence; 3) focus groups and interviews to relevant stakeholders; and 4) research through design of an mHealth solution. The data obtained was thematically analyzed to create a conceptual model for the design of mHealth solutions. Results: The Model for Motivational Mobile-health Design (3MD) for chronic conditions guides the design of condition-oriented gamified behavioral change mHealth solutions. The main components are (1) condition specific, which describe factors that need to be adjusted and adapted for each particular chronic condition; (2) motivation related, which are factors that address how to influence behaviors in an engaging manner; and (3) technology based, which are factors that are directly connected to the technical capabilities of mobile technologies. The 3MD also provides a series of high-level illustrative design questions for designers to use and consider during the design process. Conclusions: This work addresses a recognized gap in research and practice, and proposes a unique model that could be of use in the generation of new solutions to help chronic patients.
Background: Multiple sclerosis (MS) is one of the world’s most common neurologic disorders. Fatigue is one of most common symptoms that persons with MS experience, having significant impact on their quality of life and limiting their activity levels. Self-management strategies are used to support them in the care of their health. Mobile health (mHealth) solutions are a way to offer persons with chronic conditions tools to successfully manage their symptoms and problems. Gamification is a current trend among mHealth apps used to create engaging user experiences and is suggested to be effective for behavioral change. To be effective, mHealth solutions need to be designed to specifically meet the intended audience needs. User-centered design (UCD) is a design philosophy that proposes placing end users’ needs and characteristics in the center of design and development, involving users early in the different phases of the software life cycle. There is a current gap in mHealth apps for persons with MS, which presents an interesting area to explore. Objective: The purpose of this study was to describe the design and evaluation process of a gamified mHealth solution for behavioral change in persons with MS using UCD. Methods: Building on previous work of our team where we identified needs, barriers, and facilitators for mHealth apps for persons with MS, we followed UCD to design and evaluate a mobile app prototype aimed to help persons with MS self-manage their fatigue. Design decisions were evidence-driven and guided by behavioral change models (BCM). Usability was assessed through inspection methods using Nielsen’s heuristic evaluation. Results: The mHealth solution More Stamina was designed. It is a task organization tool designed to help persons with MS manage their energy to minimize the impact of fatigue in their day-to-day life. The tool acts as a to-do list where users can input tasks in a simple manner and assign Stamina Credits, a representation of perceived effort, to the task to help energy management and energy profiling. The app also features personalization and positive feedback. The design process gave way to relevant lessons to the design of a gamified behavioral change mHealth app such as the importance of metaphors in concept design, negotiate requirements with the BCM constructs, and tailoring of gamified experiences among others. Several usability problems were discovered during heuristic evaluation and guided the iterative design of our solution. Conclusions: In this paper, we designed an app targeted for helping persons with MS in their fatigue management needs. We illustrate how UCD can help in designing mHealth apps and the benefits and challenges that designers might face when using this approach. This paper provides insight into the design process of gamified behavioral change mHealth apps and the negotiation process implied in it
Guido Giunti
added a project goal
More Stamina is a research project whose aim is to explore ways in which new technologies can be used to improve healthcare and the quality of life of persons with Multiple Sclerosis.