For the patient side, we conducted 3 focus groups with 10 participants in total and 2 individual interviews. For the HP side, 2 focus groups with 8 participants in total and 4 individual interviews were conducted.
In
Ownership of ICTs was high as most individuals had laptops, desktops, and mobile phones and were frequent users of mobile phones (
Certain themes were identified during analysis: MS-related barriers and facilitators, mHealth design considerations, and general motivational aspects. Subthemes were also found and are presented in this study. Each theme and subtheme are presented mainly from the perspective of patient and bringing the HPs’ side to either reinforce or contrast relevant points.
A general overview of all barriers and facilitators to PA for persons with MS can be found in
To understand which, if any, specific MS barriers and facilitators there are to PA, we discussed general attitudes toward PA and how they coped with living with their condition. This produced certain subthemes:
An important deterrent of PA was the diminishing sense of self-efficacy and the impact MS symptoms directly have in the enjoyment of PA. According to
You don’t know how much confidence to have in yourself.
I used to do a lot of sports. 80 km of jogging a week, tennis, cross-country...Over time, it became less and less. My motivation has decreased because of MS. I still enjoy it, but not quite like I used to. Now, it feels like work.
HPs own assessments of the situation were in agreement:
Since everything requires exertion, the fun factor and enjoyment are missing somehow, so why [should they] do it?
The need for goal-setting and proper feedback was deeply emphasized in this part of the conversation. Being able to understand when progress is being achieved was considered key as the subjective experiences differed from what they actually accomplished:
[In general, if you want] to convince people that physical activity is the key, we need to give them targets. Having feedback to how you are doing is good. We need to know we are doing something right.
If you ask them, “how do you feel,” they will always say, “I don't feel good.” Interestingly, this feeling doesn’t change, they may train over 3, 4, or 5 weeks and they will feel the same. However, if you look at the parameters that you normally assess, you will see that they have improved. VO2, oxygen uptake, or maximum heart rate will have gone up. They objectively improve but subjectively still feel bad.
The important thing is that we have to show [them] clear goals. These goals have to be realistic, measurable, and achievable. [...] you have to work toward that step by step.
Persons with MS and HPs were in agreement: customizing PA to meet a patient’s individual need determines the success or failure of an exercise program. Flexibility and engagement are required.
Fatigue and fatigue management issues were raised over and over again. Persons with MS reported that, as they went along their activities of daily life, they
Participants claimed that they had to resort to “strange strategies” to be able to keep up:
I use one trick, I move all my appointments to the morning; so, people around me don’t realize that I’m not well. I then take a break in the afternoon, and if someone wants to do something, I just say that my calendar will free up again in the evening.
Participant characteristics: persons with multiple sclerosis.
| Characteristics | Persons with MSa (n=12) | |
| Female | 6 (50) | |
| Age (median, IQRb) | 43.5 (40.25-50) | |
| High school | 2 (17) | |
| Higher education | 6 (50) | |
| University or college | 4 (33) | |
| Single | 2 (17) | |
| Married | 8 (66) | |
| Divorced | 2 (17) | |
| Not working | 1 (8) | |
| Unable to work | 2 (17) | |
| Employed | 9 (75) | |
| Relapsing-remitting MS | 7 (58) | |
| Secondary-progressive MS | 3 (25) | |
| Primary-progressive MS | 2 (17) | |
| Progressive-relapsing MS | — | |
| Years since MS diagnosis (median, IQR) | 17 (10.50-21.50) | |
| EDSSd score (median, IQR) | 4 (3.75-5.12) | |
| Immunomodulators | 7 (58) | |
| Muscle relaxants | 4 (33) | |
| Antidepressants | 3 (25) | |
| Vitamin supplements | 5 (42) | |
| None | 2 (17) | |
| SWLSe score (median, IQR) | 12 (9-14) | |
aMS: multiple sclerosis.
bIQR: interquartile range.
cCategories were simplified from the Swiss Education System.
dEDSS: Expanded Disability Status Scale.
eSWLS: satisfaction with life scale.
Participant characteristics: health care providers.
| Characteristics | Health care providers (n=12) | |
| Female | 6 (50) | |
| Age (median, IQRa) | 40 (28-53.25) | |
| Physiotherapists | 6 (50) | |
| Occupational therapists | 2 (17) | |
| Sport therapists | 1 (8) | |
| Physicians | 3 (25) | |
| Years of experience (median, IQR) | 15.5 (4.50-23) | |
aIQR: interquartile range.
Information and communications technologies ownership.
Mobile phone usage. SMS: short message service.
Motivational aspects
Social comparison with others with multiple sclerosis
Negative feedback from their environment
Self-motivation issues
Multiple sclerosis symptom burden
Balance problems
Muscle weakness and fatigue
Bladder control
Medication side effects
Unpredictable course
Physical activity misconceptions
Fear of triggering a relapse
Poor understanding of benefits
Unrealistic expectations
Motivational aspects
Social support from loved ones
Collaboration with other persons with multiple sclerosis
Clear goals
Reminders from third parties
Physical activity promoters
Reserved dedicated time for physical activity
Personalized training routines
Sufficient recovery time
Noticeable benefits
HPs commented that sometimes it is helpful for persons with MS to create some sort of visual representation of the body’s energy sources.
If we had an app that would allow patients to manage their energy as a resource, [now] this would be a great thing.
When asked about what they would feel about such a “fatigue management solution,” patients responded very positively:
That would be awesome, yes, definitively. If there would be something that would measure how much energy I have left for the day and how much I’ve already used so far. That would be excellent. It would be amazing.
MS conditioned the way persons with MS live their life; not only in that they have to consider their energy as resources that need managing but also in more subtle ways. Many persons with MS report that weather conditions and warmer temperatures worsens their symptoms;
Some experience bladder and bowel problems that shape how they plan their daily routine.
The progressiveness of the disease acts as a strong barrier and reduces motivation for acquiring healthier behaviors. One participant stated:
I don’t want to change the way [I live my life] because a relapse may happen and then what [was the point of changing them]?
MS gets in the way of doing things
They don’t want to grapple with the disease and just want to do things like other people of their age, […] patients often struggle with themselves and give the disease very little room [in their life].
MS isn’t always easy to understand for us. MS patients are more sensitive because of the condition, one wrong word can be enough to demotivate them.
Both sides felt that persons with MS would benefit more if they had some form of cognitive activity they could do to stimulate them and prevent further deterioration.
The following were design considerations of interest to designers of mHealth solutions. They identify barriers to adapt design approaches. Although the exploration was focused on mHealth solutions, it was common for participants to use the word “app” interchangeably; this change in terminology has been kept intact when quoting participant’s views. A summary of suggested mHealth solution features and characteristics that emerged from our interactions is presented in
On this topic, both sides were interested but hesitant. The main concern was regarding the value an mHealth solution could hold. ICT usage barriers were mentioned as
Customizable goal setting
Challenges need to be tailored to the specific person with multiple sclerosis characteristics
Energy profiles and fatigue management
Information and tools that help users in managing their day-to-day activities
Patient education
Offer verified information that is helpful and reliable
Data visualization
Information must be presented in a way that is meaningful to persons with multiple sclerosis
Positive feedback system
Rewards and incentives for completing tasks and objectives
Activity tracking
Register metrics such as steps, calorie consumption, heartbeat, and quality of sleep among others
Exercise library
An array of different activities specific to multiple sclerosis such as fitness or relaxation techniques that can be selected
Game-like attitude
Engaging in a playful mindset in a way that is highly pleasurable and motivating
Strong evidence base
Features and information offered should have a solid scientific foundation
Remote monitoring
Health care providers can follow persons with MS progress and give feedback
Optional sociability
Ability to opt-out of social media features such as messaging, feeds, or other types of social comparisons
Reminders systems
Notifications that reminds persons with MS to engage in activities
Personal data management
Access to personal information and data defined by the user case by case
Social Factors
Negative word of mouth from peers or health care providers
Disruption of the health care provider-patient relationship
Promotes competition among multiple sclerosis peers
Reliability of the solution
Unrealistic promises
False information
Inaccurate measurements
User experience
Rough on-boarding experience
Obvious or excessive advertising
Constant notifications or reminders
Usability
Unattractive design
Confusing interface
Accessibility issues
Value proposition
Solution does not fit the needs of users
Unclear purpose
Overall lack of personalization
Data ownership and access by third parties
Refusal to use information and communications technologies
When confronted with the question of whether they would use a mobile solution for MS, many were intrigued but unsure about
The effectiveness isn’t clear to me.
That's what I can’t think of. What does the app give them?
It maybe true that we [health care professionals] are not likely to recommend or suggest technology-based solutions. I’ve never thought about it. Maybe because there is still no clear answer as to how apps can help. Perhaps, we feel that the personal relationship that we form with our patients is not something we can replace with technology.
Items that increased the intent of downloading and using mHealth solutions were knowing that experienced professionals were involved in the design and having endorsements from recognized MS institutions. A point where all HPs agreed on was that mHealth solutions for MS should be based on solid scientific information and theory. For health care professionals, it was a matter of tool validation, whereas for patients, it seemed to be more about effective word of mouth. The strongest motivators for downloading or recommending an mHealth solution were clarity in its features and promises, and solid scientific backing:
[I read] the description and what it offers [to me]. [I like it] if there are bullet points about what it will give me. Perhaps something like having a manual about how to use it. […] I think that’s something that I look for before installing.
If an app has theoretical basis behind it and it’s useful for the patient, I would feel comfortable [recommending it]. Even if it doesn’t have publications [proving it works].
The main deterrents for installing, and most influential factors preventing HP recommendation of an mHealth solution, were the presence of false information and negative experiences from acquaintances or read on the news.
Social factors
Endorsements from experts and patient associations
Reinforces the health care provider-patient relationship
Allows collaboration and support amongst multiple sclerosis peers
Integration of family and friends in the solution use and flow
Reliability of the solution
Up-to-date information
Friendly language
Theory and evidence based
User experience
Customizable features
Variety of options
Playfulness
Usability
Simple to use
Attractive design
Consistent interface
Value proposition
Benefits of use must be evident
Provides incentives and motivation
Specific to persons with multiple sclerosis needs
Data ownership and access management
Designed and developed in collaboration with health care providers
A shared view among HPs was that these solutions should not get in the way of standard care, rather they should act as additional support tools that could let professionals guide patients from the distance:
An app can be used to motivate people. The app can be like a kind of coach. A virtual coach that gives them a task and if they do it, they’ve reached a partial goal, for example, [they get some incentive]. And they know how many points they earned by the end of the month. That could be an incentive.
This sentiment was in line with what persons with MS were expressing, for example:
[an app could present something like] an obstacle course that you have to get through. [Something] that you tackle daily. The app would have to give you an alert that says you have to walk 2 km today, for example. And you have to be able to set [your own] goals. The patient should try how long he or she can walk and then perhaps increase the amount. That would maybe make people use it more. In a game, there are also tasks that you have to do. If you finish them, you get something.
This game-like attitude heavily resonated in several other patients and even some HPs:
For me, it’s important that (the app) is playful. We all remain children deep down. It should have colors, some music and be attractive.
Personalization and customization was regarded highly in both groups, yet as
Everyone is as active as they want to be. The app is of no use if the person doesn’t want to do things.
Participants with MS held in high regard the opinion of their HPs, often consulting them for information validation or seeking advice. A common concern was not about finding information on the Web, but rather making sure that it was right for them.
There are a lot of types of MS and what may help one person might harm another one
HPs were reticent on directing their patients to any online sources:
They can find information online, so there’s no need for a special app for that I think. However, you can get lost in the sea of the Internet and you may need an expert to guide you.
The need for reliable information regarding other symptoms was mentioned:
We may need information about incontinence. What to do if your bladder cramps up? Maybe knowing about pelvic exercises [would be useful].
There was a lot of uncertainty about which activities would be beneficial and not harmful to them. Because of their condition, participants with MS feared engaging in new activities as these are “untested waters.” This was seen not only in terms of PA but also for nutrition:
I have equipment for training at home, but I don’t know if I use it correctly or at the right time. I want to exercise a group of muscles but I don’t know if that will hurt another group [of muscles]. What should I be eating now? I don’t know what to do.
The health care community seemed to be in part to blame for these anxious feelings. MS misconceptions and outdated knowledge among professionals played a role in fostering this uncertainty:
I have a doctor who tells me that I have to do less, as less as possible. […] Otherwise, I might do too much and put too much strain on my body, and this could possibly trigger a relapse.
Many neurologists are telling patients that they shouldn’t do much physical activity, or that they are not allowed to do some sports. [in the past] patients and medical reports have described a deterioration of symptoms due to PA and the main view was to not recommend training to avoid this deterioration. But now, we know that this is only a temporal setback, just for a few hours and then people recover completely. It has no lasting effect on MS symptoms; after a resting period, functions are restored to normal level. There is also no risk to induce a relapse. A recent study, published last year I think, shows that there is no correlation between physical training, even in higher intensities, and a risk of inducing a relapse, but not all of us [professionals] stay updated.
Participants with MS and HPs had negative perceptions of third party involvement in mHealth projects. For the patient side, the main objection was in terms of pharmaceutical or insurance companies taking advantage of their medical and personal data. They saw their participation in mHealth projects as some sort of a warning sign and expected their involvement to be explicitly clear upfront:
I’d like to know who’s getting the data and what for. It’s my personal data.
If everyone could see my data, I wouldn’t give [the app] a chance.
The HPs were less opposed to hearing about pharmaceutical companies being involved but still were concerned. HPs wondered whether it would be possible to restrict these companies from accessing sensible data:
I don’t want to have these [pharmaceutical] companies having access to that information. The commercial interest is dangerous in this way. I feel reluctant to give too much information […] to health insurance companies even. I think it’s an aspect that needs discussion and setting up clear rules for all participants.
Using SDT as lenses, we coded participants with MS’ comments and responses with regard to competence, autonomy, and relatedness.
Autonomy within SDT concerns a sense of volition or willingness when doing a task; events or conditions that diminish the sense of choice interfere with perceived autonomy. All participants with MS wanted to, in some degree, be able to influence their condition treatment. They wanted to be able to set their own goals or decide what activity to do at a given time. They wanted to feel that they have a choice in the matter. For example,
[I am doing it] not because I have to do it, but because I want to do it. And [only] then I can do it.
The loss of perceived autonomy seemed to play an important role. It was often mentioned as barrier and facilitator at the same time. It presented itself as a cause for concern and depression for some and as a motivator for others:
I can’t do everything I did before [I was diagnosed].
Self-motivation is very difficult. I always need something that I can’t do anymore and then I want to be able to do it again.
Competence refers to the need for challenge and feelings of effectance; opportunities to acquire new skills or to receive positive feedback increase perceived competence. For participants with MS, acknowledgment of their progress and tracking was very important:
At first, I could only walk 6 meters and now I can do 180 meters without taking a break. That makes me happy. I feel more like doing something.
Presenting situations as challenges to overcome was highly motivating for them, but there were some caveats.
I’d rather be amongst healthy people and have the challenge to keep up with them.
To surpass his limits every day but that it was important to understand that you shouldn’t be in competition with other persons with MS. We need to be supportive [to each other].
Relatedness is experienced when a person feels connected with others, positive social interactions enhance the feeling of relatedness. The way participants seemed to discuss social interactions required a clear distinction between how they engage with others with MS and with people without MS.
The relationship participants with MS have with others with MS is complex. Interacting with those who share their condition had a very strong negative impact as evidenced by comments such as:
I don’t want to speak to everyone who has the same disease. That doesn’t help me. If you get to talk with someone who shares the same values and goals, that's good. But if you wear glasses, you don’t want to speak with everyone just because they wear glasses too.
It’s very depressing. It doesn’t really help me [seeing others with MS], let’s put it this way. People with MS tell me "Oh, you can still do this, I can’t anymore” or "Oh, I can’t sleep because everything hurts." They tell me that they are always exhausted and are always tired. It just drains me [to hear them]. It takes away all my energy.
I always saw other patients and heard many bad stories. I feel that having a negative or positive attitude is what determines things. I once received a request for a forum where you sit in a circle and talk with other MS patients. I don’t need such a self-help group.
This particular aspect was very much so present for the HPs as they noticed that:
There are patients who tell us that they don’t want to see other patients with MS [with more advanced MS than them] because they don’t want to see their future.
However, spending time with other people with MS was not always a negative thing. Going through the same experience provides a common ground that they share:
I’m in a regional [MS] group. We go on excursions or meet for coffee. Then, we talk about everything but the disease.
I don’t stress when I’m with them [persons with MS], [I don’t think] about the weakness in my legs or [the way I look with] my walking. I know that they experience the same problems that I do or worse; so, it takes some of the stress out because I don’t feel like I’m being watched.
It’s important to distinguish how you’re connected. I don’t want to compete [with other persons with MS].
It’s important to do things in a group. It’s much better than being alone. The motivation is stronger that way.
Having a social circle of family and friends who provide support was a determining factor for motivating persons with MS to take better care of themselves. This was present in all interviews and participants. HPs had a slightly different take on this, as family members’ expectations can have their downsides:
If the partner is healthy, they [persons with MS] often put themselves under too much pressure [to perform].
The way strangers look at them had a big effect on participants with MS, to the point that some of them try not to move just to limit what can be seen and criticized:
If I’m not having a good day, I won’t leave the house. I’d know early on in the morning. [I know that] I’ll have balance problems…I've been told a few times by strangers that “I should drink less.” If I’m really having a bad [symptoms] day and someone comes and says something like that, it gets to me.
However, friends and family remind them that:
We’re not alone with our MS. There are people thinking about what they can do to help us.
The information collected from the questionnaires, structured surveys, focus group, and individual interviews was reviewed and used to devise case profiles. We identified specific characteristics of our participants, such as age, level of PA, ICT usage, and general motivations, and used clustering to create 4 MS persona types: (1) high ICT, medium PA; (2) medium ICT, high PA; (3) medium ICT, medium PA; and (4) low ICT, low PA.
Personas created represent potential persons with MS and highlight their individual barriers and facilitators to mHealth adoption:
Demographic information from our participants was used to generate socioeconomic traits.
Medical information from the participants was summarized and grouped to create medical profiles.
eHEALS scores were converted to persona traits that represented the eHealth and health literacy levels.
SWLS and interviews helped define personality traits such as a life perspectives or sociability.
Data from the focus groups and interviews helped create the different stories.
Multiple sclerosis persona with high information and communications technologies and medium physical activity.
Multiple sclerosis personas’ synopsis.
| Persona name | Age | Gender | Years with MSa | Type | Description |
| Laura Miller | 44 | Female | 19 | High ICTb, medium PAc | Laura is married with 2 kids, and her family is very important to her. She is afraid that MS will make her a burden to those around her. She understands she should work out more but feels tired all the time. She likes to use technology and has a smartwatch. |
| Tim Smith | 42 | Male | 5 | Medium ICT, high PA | Tim is an elementary school teacher. He is married to Margaret who always wants to go for walks with him. He likes to stay positive so he tried not to talk about MS. He likes using step counters because he feels he achieves things that way. |
| John Peterson | 38 | Male | 12 | Medium ICT, medium PA | John is an office clerk and not a big fan of technology. Things are complicated enough as they are. He has been having problems with his eyesight. He does not work out because he is afraid to trigger a relapse. His wife tells him that he gets too competitive sometimes. |
| Amanda Palmer | 47 | Female | 15 | Low ICT, low PA | Amanda is divorced and does not like to exercise. She does housework and feels that is enough. She does not really understand technology or why people would use it except for the basics. Friends are very important to her. |
aMS: multiple sclerosis
bICT: Information and Communications Technologies
cPA: physical activity