Encouraging physical activities at home for people with multiple sclerosis with mHealth tools: A literature review

2.1 Search engine query

To respond to the central question of this review, we chose the following queries: “multiple sclerosis” AND “rehabilitation” OR “physical activities” AND “mHealth” OR “mobile application.” We used the following digital libraries: MEDLINE,1

Results were screened manually. First, duplications were removed as were articles written in a language other than English. Second, results were filtered according to the following three criteria:

OPEN IN VIEWER

1.

The study focused on MS;

As mHealth concerns mobile and tablet applications, we chose not to take into account the numerous papers about videogame consoles or computers. There is currently limited research on mHealth for pwMS. Since our aim is to develop an application for people exercising alone at home, we excluded research about the practice of live telerehabilitation, where therapist is present online during the rehabilitation sessions for patients hospitalized in rehabilitation centers or at home.

Papers were selected on the basis of their title and abstract content.

Search engines were consulted with the aforementioned queries between April 19 and 30, 2020. Figure 1 shows the pattern used to select the studies. One author selected papers from databases. Then, three of the authors browsed the selections (title + abstract) and selected together the relevant articles.

After applying the previously mentioned criteria, we obtained a total of seven articles dealing with our subject of research.

These limited results (i.e., articles on our subject) bring to light the fact that very few studies to date examine mHealth applications that aim to help pwMS to practice rehabilitation exercises or physical activities at home. Although we did not use publication date as a selection criterion, the seven papers were all published after 2017. Currently, the majority of papers focus on MS treatments or mHealth with a general population of patients (not specially pwMS). Table 1 presents general information about the seven selected articles and their research goals.

Each study selected for review underwent data extraction. The goal was to analyze and obtain relevant information from the studies in order to answer our central question: how can a mobile application motivate pwMS to practice physical activities and manage their fatigue? For all the papers, we obtained a list of user feedbacks, guidelines, comments, and so on. We then classified this information into categories. This highlighted five key issues that should be taken into account in the conception of a mobile application for pwMS: motivation, fatigue, exercise context, physical accessibility and quality of life. The results below provide the current state of knowledge about these five key issues. Table 2 summarizes the contribution of each article to these issues.

3.1 Motivation

The issue of motivation is often described in the literature on pwMS and for this reason, we wanted to know how each selected study aroused the motivation of pwMS. Indeed, some participants dropped out before the end of the included studies because of a lack of motivation, among others [22, 23]. D’hooghe et al. concluded that the patients who gave up often reported a lack of motivation, indicating that a telerehabilitation program might not be well suited to pwMS [22]. Giunti et al. specifically characterized a general lack of enjoyment of physical activities as “a big demotivator” for pwMS [20]. The selected studies thus proposed two types of investigation:

•

Focus groups and individual interviews to question pwMS and their health caregivers about how to motivate pwMS to practice exercises through mHealth;

•

Evaluations of the mobile applications used by pwMS to test devices that arouse their motivation.

Several elements were used or discussed in the studies to motivate pwMS to practice physical exercises.

3.1.1 Visual feedback

The use of visual feedback allows pwMS to follow their daily goal in real time. This was appreciated by pwMS who tested the application proposed by Geurts et al. [23]. Moreover, Giunti et al. remarked that pwMS and health care providers often mentioned that visual energy expenditure on a tool could be a good way to increase strategic energy [20].

3.1.2 Audio feedback

Geurts et al. provided and evaluated an audio system to motivate pwMS to walk while using the application. Results showed that this positive reinforcement stimulated some participants to walk further and faster [23]. However, the audio files were played in a systematic manner and did not follow the progress of each participant. Consequently, some of the audio files were perceived as depressing, because participants could not follow the instructions and advice.

3.1.3 Reminders and encouragements

The application of Ehling et al. is designed to make pwMS practice exercises with the objective to enhance spasticity [17]. This application uses reminder functions and encouraging slogans. If the application has not registered any activity for that particular day, an automatic email reminder is sent to encourage patients to practice their exercises. This reminder was appreciated by participants.

3.1.4 Reward programs and watching other people exercising

The results of focus groups provided some indications about how to motivate pwMS in the study of Thirumalai et al. [19]. Indeed, according to the interviewed pwMS, a reward program to complete the exercises helped to motivate them. Further, the interviewed pwMS stated that watching other people with similar abilities perform the exercises increased their motivation to exercise.

3.1.5 Professional endorsement

The study conducted by Giunti et al. highlighted that an official “professional endorsement” helps pwMS to accept and use mHealth solutions [20]. Indeed, pwMS expressed their fear of doing something wrong due to the evolution of their disease.

3.1.6 Concrete goals

Geurts et al. described a study to test an application that encouraged pwMS to walk more [23]. The usefulness of setting a goal at the beginning of the study was highlighted. After the study, participants reported that having a concrete goal was their main motivation to keep walking throughout the study.

To conclude, it seems important to identify the types of devices and concepts that motivate pwMS and incorporate them into the conception and design of the mobile applications. Furthermore, according to Simblett et al. [18], a lack of motivation is known to be a key barrier to mHealth. It is therefore crucial to take this factor into account when proposing mHealth tools.

3.2.1 Mobile application specifically designed for fatigue management

The application developed and presented by Giunti el al., called “More Stamina” is specifically designed for fatigue management in pwMS [21]. It is a task organization tool that helps pwMS to manage their energy and reduce the impact of fatigue in their everyday life. It provides “to do” lists for users to manage their daily tasks and gives some help to pwMS to ensure that they complete the list while managing their fatigue. The tests described were only performed with designers and researchers without the involvement of pwMS, although this will be the next step in the design of the application.

3.2.2 Exercise program adapted to individual fatigue

In the studies of Ehling et al. [17] and D’hooghe et al. [22], fatigue was used as an evaluation criterion to test the application. Ehling et al., who tested an application for practicing exercises for muscular spasticity, reported no change in the fatigue levels of pwMS during the protocol [17]. It is important to highlight that the exercises were chosen by the physiotherapists of pwMS who understood their patients, their physical capacities, and their levels of fatigue.

3.2.3 Energy management system

The goal of the research presented by D’hooghe et al. was to test an application to help pwMS to simultaneously practice physical activities and manage their energy levels [22]. Globally, participants felt an improvement in their perceived cognitive and motor fatigue after 12 weeks of using the application. According to the study, pwMS presented fewer limitations at work and in their daily life activities, and they succeeded in increasing the amount of physical activities.

3.2.4 Individually adapted goals

Finally, the study of Guerts et al. allowed pwMS to realize that physical exercises (walking twice a week as requested by the tested application) did not increase their fatigue [23]. It is important to note that the walking duration was adapted to the individual capacity of each participant.

To conclude, it appears that fatigue should be taken into account in the conception of the mobile application and the choice of physical exercises.

3.3.1 Exercises adapted to individual abilities

The application presented by Thirumalai et al., which did not initially include specific exercises adapted to the person and their capacities, received requests from pwMS who had tested the application to incorporate personalized exercises [19]. Participants reported that they wanted to be able to input their capacities into the application and receive a personalized program based on the type of activities that they could do.

Ehling et al. proposed exercises specifically chosen by the physiotherapists of pwMS [17]. The intervention of a health care provider to choose adapted exercises can be useful. For example, in the study of Giunti et al., pwMS expressed their fears about hurting themselves or triggering a relapse [20].

3.3.2 Well-explained exercises

The research described by Ehling et al. [17] and Thirumalai et al. [19] focused on the exercise guidelines. The videos and visual instructions were appreciated by pwMS who tested the mHealth technologies.

3.3.3 Known exercises

Thirumalai et al. used exercises already known to the participants or similar to those given by their therapists [19]. In this manner pwMS were not confronted with new exercises and had a sense of relief about practicing exercises provided by a health care specialist.

3.3.4 Exercises for daily life

Finally, all the exercises provided in the articles of this literature review [17, 18, 19, 20, 21, 22, 23] could be performed by pwMS at home and easily incorporated into the planning of their daily life activities. As Geurts et al. [23] noted, increasing the physical activity of pwMS can be difficult because the usual ways of practicing physical exercises like fitness centers are not always accessible and possible for them.

Finally, the type of exercises is important to make pwMS want to practice them and use the application, because this issue is directly linked to their level of motivation and fatigue and can have a major influence.

3.4.1 Disabilities considered for a mobile application

Guinti et al. explained that the disabilities observed in pwMS such as reduced fine motor skills and blurry vision should be taken into account by the designers of mHealth solutions for pwMS [20].

3.4.2 Variable disabilities

Simblett et al. added that pwMS can have fluctuating symptoms if they are affected by RRMS and progressive limitations if affected by SPMS [18]. Indeed, pwMS may easily use their mobile application one day but experience accessibility problems on another day because of the disease fluctuation. This is therefore an important element to consider in the design of mHealth technology because pwMS can have disabilities that restrict their use of mHealth.

3.5.1 Quality of life as an evaluation criterion

Only two studies included in this literature review selected quality of life as an evaluation criterion. Ehling et al. found no significant change [17], but D’hooghe et al. observed a significant improvement in physical limitations [22]. According to the authors, this was due to the improvement in the perceived physical health limits of pwMS. D’hooghe et al. also showed that pwMS felt fewer limitations at work or in other daily activities.

3.5.2 Daily life behavioral change

The application tested by Geurts et al. enhanced the intention of pwMS to take care of their health. Participants noted that the application led to a real change in their health lifestyle [23]. Thirumalai et al. also demonstrated a desire among pwMS to participant in community physical exercises [19].

Finally, there was limited discussion in the selected studies about the daily life changes of pwMS after using mHealth or the effect of the application on their quality of life. However, the studies describe positive effects and show a real need to change the daily life behavior of pwMS.

4.1 Involve therapists in the use and conception of mobile applications

One of the major lessons learned was that pwMS often need the endorsement of a health professional to use mHealth. They are afraid of practicing physical exercises alone without their physiotherapist or health care provider to advise them about the type of exercises and their intensity [2]. The fear of relapsing or injuring themselves stops them from taking initiatives in their physical activity.

This can be linked to the motivation issue. If health professionals are involved in the use of mHealth, it can enhance the motivation of pwMS to practice physical activities as they are specifically advised by their therapist. Indeed, a lack of motivation is often described in the literature, and results of the study of Simblett et al. confirmed this [18]. Furthermore, Qudah et al. showed that when health care providers are involved, mHealth improves the participation, empowerment, and autonomy of patients in their health care [29].

Consequently, we recommend including therapists in the use of mobile applications to propose exercises and thus motivate pwMS. We also recommend involving them in the conception of the application, as they are not only familiar with the needs, disabilities, and lifestyles of pwMS but will also be mHealth users themselves.

4.2 Chose personalized exercises according to pwMS capacity and fatigue

The type of exercises seems to influence the participation of pwMS. The results clearly show that the exercises have to be specifically adapted to each person and their capacity. It appears that the best solution is for pwMS to practice the exercises proposed by their therapist [17, 18, 19, 20, 21, 22, 23, 30].

If this is not the case, then fatigue, which is a common symptom with pwMS [31, 32], becomes a barrier to practicing physical activity [2]. Three of the studies included in this literature review did not show an increase in fatigue among participants despite their regular practice of physical exercise [17, 22, 23]. The tested applications took fatigue into account in their design, which allowed the participants to simultaneously manage their fatigue and physical activities. If fatigue is incorporated into the design of an mHealth tool to encourage pwMS to practice exercises, then it is not a barrier. We therefore recommend the use of specific exercises linked to a concrete goal that is personalized for pwMS depending on their capacities and fatigue limits, as advised by therapists who know their patients.

4.3 Take physical and cognitive limitations into account

According to Simblett et al. [18] and Giunti et al. [2], mHealth tools should be specifically designed for pwMS. Indeed, MS symptoms such as motor or visual impairments [3] can limit the use of a smartphone. Further, the variation of symptoms in RRMS and the evolution of symptoms in SPMS should also be considered in the design of mHealth tools [18]. The studies overviewed in this review do not consider cognitive impairments, although they are also a symptom of MS [33] that can limit the use and understanding of an mHealth tool. Therefore, due to the variety of symptoms in MS, we recommend taking the physical and cognitive limitations of pwMS into account during the conception of a mobile application, which should be accessible for any type of disability.

4.4 Place the quality of life of pwMS at the center

Finally, the goal of practicing physical activities and managing fatigue is to improve, or at least not decrease the quality of life of pwMS by stabilizing their autonomy and abilities [10, 11, 12]. Indeed, physical exercise may help pwMS to overcome certain limitations encountered in their social life, professional work or other daily life activities. In the series of studies selected for this review, only two used quality of life as an evaluation criterion, and only the study of D’hooghe found good results in terms of pwMS experiencing fewer limitations in their work and daily life activities [22]. In the studies of Thirumalai et al. [19] and Geurts et al. [23], participants showed more interest in their health, although the effect of physical exercises on their daily life activities was not evaluated. The quality of life of pwMS should therefore be placed at the center of mHealth tools and their design. The limitations of pwMS in their daily life activities are therefore the target of this research. Because MS is a progressive disease, it is difficult to improve the quality of life of pwMS The aim is rather to maintain their autonomy, capacity and quality of life for as long as possible. Finally, we recommend placing quality of life at the heart of projects to design a mobile application to motivate pwMS to practice physical activities. Indeed, this issue of quality of life should be kept in mind during the conception and design of mobile applications in order to develop a tool that responds to user needs.