Abstract
Multiple sclerosis (MS) is a complex inflammatory disorder of the central nervous system. It is characterized by a large number and variety of symptoms, with cognitive changes and mobility limitations being the most significant ones related to disability. A majority of individuals diagnosed with MS experience a major decline in their abilities due to the progression of MS after 5 years post-diagnosis. Following this period, they need to learn how to cope with the functional limitations caused by the disease and how to age with MS due to an early onset of age-related problems. As a result, they have to manage the effects of the condition on their lives every day. Self-management can help mitigate the symptoms associated with MS. Mobile health (mHealth) apps provide potential support for self-management of the condition as they represent robust technologies that have potential to include all the interventions proven to be useful to manage multiple health problems. However, none of the mobile applications on the market for people with MS present the holistic and integrative app that provides their users with a variety of the valuable functional features for the self-management of their health. Furthermore, there is a lack of literature on needs and concerns of individuals aging with MS to inform the design of the mobile technologies and related functional features of the MS-specific mobile apps. The purpose of this paper is to report the results of a qualitative study with individuals aging with MS, to (1) understand their health and wellness self-management needs, and (2) recognize the opportunities to meet those needs through mobile technologies and specific functional features. A systematic review of the functional features in MS-specific mobile applications is presented with the purpose to understand the current state of the utility of mobile apps and to identify two applications with the most versatile functionality.
Keywords: Aging, Human factors, Healthcare informatics, Mobile applications, Multiple sclerosis, User needs
Introduction
Multiple sclerosis (MS) is a complex inflammatory disorder of the central nervous system (CNS) [1]. This chronic and progressive condition is affecting around 400,000 individuals in the USA and 2.5 million people worldwide, with approximately 10,000 newly diagnosed cases of MS annually [1]. MS is characterized by a large number and variety of symptoms [2]. Cognitive changes and mobility limitations (e.g., spasticity, weakness in one or more limbs, gait difficulties) are the most significant ones related to disability [2]. Other common symptoms include fatigue, depression, chronic pain, sleep disturbances, bladder and bowel dysfunction, numbness or tingling, vertigo and dizziness, emotional changes, sexual problems, and visual impairments (e.g., blurred vision, poor color contrast or color vision, pain on eye movement) [2–5].
A majority of individuals diagnosed with MS experience major decline in their abilities due to the progression of MS after 5 years post-diagnosis and after age 40 [4]. Following this period, they need to learn how to cope with the functional limitations caused by the disease and how to age with MS due to an early onset of age-related problems [4, 6]. In addition to the signs of early aging caused by MS symptoms and consequent impairments, these individuals experience increased disability caused by the condition due to the physical effects of aging and comorbidities [6, 7]. As a result, they have to manage the effects of the condition on their lives every day [2]. More specifically, they need a continuous condition, symptom, and medication management, coupled with education and effective strategies for addressing the exacerbations (i.e., a worsening of existing symptoms or an onset of new symptoms for at least 24 h, also called a relapse) [8]. They need to understand their condition to take charge of managing MS and related impairments [8]. Self-management can help mitigate the symptoms associated with MS [2, 9–12]. To support self-management, access to pertinent information, resources, and education about the nature of MS, the treatment, and methods for improving quality of living (QOL) delivered in an appropriate way could considerably improve lives of individuals with MS [3]. Additionally, research studies [13–15] suggested that self-management interventions using telehealth (i.e., remote-patient monitoring) have a potential for overcoming access barriers in MS. Moreover, the World Health Organization [3] and the Consortium of Multiple Sclerosis Centres [16] advise that individuals with MS take control of decisions affecting their wellness and life and self-manage their condition as often as possible. As a result, there is a great need for efficient tools to support the health and wellness self-management of daily activities for individuals with MS.
Recently, mobile technologies have been developed that integrate assistive (AT) and information technologies (IT), potentially providing better solutions for older adults and people with disabilities [17]. People with ranges of motor disabilities are adopting mobile devices, they are using them on a daily basis, and they think that these devices empower them and help them be independent [18]. However, they often use customized devices and configurations, suggesting that there is a need for the improvement of accessibility in these devices.
In addition, there have been a number of clinical studies that reported the benefits of the technologies in managing singular impairments that characterize MS, such as mobility, balance, and cognition [19, 20]. Specifically, these studies support the benefits of video games and virtual reality (VR) for individuals with chronic conditions leading to balance and mobility problems, including population aging with and into a disability [19]. Following 10 weeks of Xbox 360® and Kinect console use for 20 min per session, 4 days per week, individuals with MS improved balance and postural control [21]. After 10 weeks of Nintendo™ Wii use for 20–30 min, individuals with systemic lupus erythematosus had reduced fatigue and weight and waist circumference [22]. People with Parkinson’s disease had significant improvements in mobility following 4–6 weeks of Nintendo™ Wii Fit balance board use [23]. In healthy older adults, improvements in balance and mobility were reported following Nintendo™ Wii Fit use 20–40 min, two to three times per week over 6–10 weeks [24]. After using three 40-min VR-based video game (Wii) sessions per week for 12 weeks, participants with cognitive decline experienced improvement in the outcomes in terms of balance, depression, and QOL [25]. VR technology with specialized interface devices was used to improve motor skills including reaching [26–28], hand function [29–33], and walking [34–36].
More than half of all individuals living with MS have cognitive impairment [37]. Playing specific video games strengthens neural connections in the brains of people with MS and increases their cognitive abilities [20]. During 8 weeks, participants with MS played a video game console and the Italian version of a video game (Dr. Kawashima’s Brain Training; Nintendo, Kyoto, Japan http://www.nintendo.it/Giochi/Nintendo-DS/Brain-Training-del-Dr-Kawashima-Quanti-anni-ha-il-tuo-cervello) for 30 min, 5 days per week, and experienced significant increases in functional connectivity in brain areas involved in cognition [20]. An adaptive computer-based cognitive training program enhanced cognitive functioning in individuals with MS after playing their assigned game for 1 h per day, five sessions per week, over 12 weeks [37]. Games Lumosity [38], MyBrainGames [39], and CogniFit [40] are designed specifically for improving cognition in people with MS. Physical and cognitive decline in older adults affects their stepping abilities and increases the risk of falls [41]. After 8 weeks of playing a step-pad system exergame as often as they liked with a recommended 2–3 sessions per week for 15–20 min each, older adults experienced a significant improvement in their physical and cognitive abilities.
However, these technologies focus on a singular impairment (e.g., balance, mobility, or cognition impairments). As a result, mobile health (mHealth) apps offer potential holistic support for self-management of the condition as they represent more robust technologies that have potential to include all the interventions proven to be useful to manage multiple health problems [42]. mHealth self-monitoring applications offer a range of tools to assist with health and wellness daily organization, communication with the healthcare providers, and education [42]. Although individuals with MS have adopted and accepted mobile applications as a way of receiving the information and support from their healthcare provider for MS management and scheduling appointments on a mobile phone [43], the number of mobile apps designed for this user population and their functionality are limited to a small number of features. Moreover, research states that the community forum, telehealth, gamification, and goals present valuable functional features together with health self-reporting and tracking of data, creating and sending reports, and education [44]. However, none of the mobile applications on the market for people with MS present the holistic and integrative app that provides their users with a variety of these features. Furthermore, there is a lack of literature on needs and concerns of individuals aging with MS [45] to inform the design of the mobile technologies and related functional features in MS-specific mobile apps.
The purpose of this paper is to report the results of a qualitative study with individuals aging with MS, to: 1) understand their health and wellness self-management needs, and 2) recognize the opportunities to meet those needs through mobile technologies and specific functional features. A systematic review of the functional features in MS-specific mobile applications is presented with the purpose to understand the current state of the utility of mobile application and to identify two apps with the most versatile functionality.
Methods
First, we analyzed the mobile apps and their functional features designed for this user population to select two apps with the most diverse functionality for the needs assessment study. Second, we conducted focus groups to gather the information about the needs of individuals with MS for their health and wellness self-management.
A Systematic Review of the Functional Features in MS-Specific Mobile Apps
The number of mobile applications designed for people with MS is very limited (Fig. 1.). Nine applications available to this group of users primarily focus on providing basic information about latest research, news, and practical tips on health, nutrition, and fitness, self-recording of health status, medication adherence, daily activities, symptoms, mood, and similar, and/or sharing the data with healthcare providers (Table 1.).
Fig. 1.
Current mobile apps for people with MS: My MS Manager [46], MS self [47], MySidekick for MS [48], MS Journal [49], SymTrac [50], MS Attack [51], MS Buddy [52], myMS Diary [53], and My MS Conversations [54]
Table 1.
The initial list of the important functional features in mHealth apps
| Functional features | Description of the feature |
|---|---|
| Health and wellness self-reporting (journal) | A self-management feature that lets users to record information with a goal to track and understand the condition and modify personal behaviors to achieve a preset goal |
| Health and wellness tracking using wearables | A self-management feature that connects the app to the wearable(s) to track and collect the health data |
| Creating and sharing the reports | Feature that stores the self-reporting and tracking data, create charts and reports, and allows the user to send this data to a healthcare provider (e.g., email) |
| Education | Feature that offers educational resources and information about a condition, including condition-specific news, research, and tips |
| Goals (plan or orders) | Feature that provides a strategy for an action to reach health and wellness goals, including specific steps to guide the process |
| Reminders | Feature that prompts the user to take an action and participate in a specific behavior through the use of a preset alert |
| Community forum | Feature that offers a chat room or a message board for individuals with the condition and caregivers to share experiences and ask questions |
| Gamification (achievements) | Feature that offers points, badges, and/or different levels of engagement as a health goal is achieved |
To identify the functional features in mobile applications for people with MS, we conducted a systematic review starting with a search strategy to find all the apps for this user population. We then developed a set of valuable features in mHealth apps, extracted the information about the consumer MS-specific apps from the app stores (iTunes and Google Play) and the app websites, and downloaded all the apps to further explore their functionality.
App Search Strategy
The search was conducted on the Google Search (Google LLC) first and the online app stores, iTunes (Apple Inc) and Google Play (Google LLC). We searched iTunes and Google Play app stores between November 11, 2015, and December 20, 2015. The following search terms were most useful in finding the apps during the initial stage: “multiple sclerosis,” “ms,” “ms diary,” “ms journal,” “multiple sclerosis health,” “ms health,” “multiple sclerosis tracker,” “ms tracker,” “multiple sclerosis management,” “ms management.”
MS-Specific Mobile Applications
We found nine consumer apps, which provide only basic functionality that can be found in other health apps for the general population and individuals with other chronic conditions. Multiple Sclerosis Association of America (MSAA) released a mobile app for health self-reporting, My MS Manager, for individuals with MS and their caretakers [46]. Similarly, MS self offers a journal that can be later easily accessed by the user who can share their data with the healthcare team [47]. Another self-reporting app is called MySidekick for MS [48], which also provides medicine reminders and a memory exercise. My MS Conversations provides an interactive group session with experienced virtual individuals with MS on selected topics [54]. MS Journal is injections and medications reminder tool for individuals with MS and their caregivers [49]. My Multiple Sclerosis Diary [53] is another injections reminder mobile app that offers injection location and time set up to manage taking injectable medicines. SymTrac was designed as a health self-reporting tool that stores and shares the health charts with healthcare providers [50]. Social app MS Buddy [52] pairs individuals with MS with another person with MS to chat daily. MS Attack app [51] helps users learn about MS symptoms, how these present themselves during the MS attack, and provides a location of the UT MS Clinic and the Neuro Eye Center.
Methods for Identifying the Functional Features
To identify the specific functionality needs for individuals with MS, we focused on the health and wellness self-management features in the mHealth applications and did not include the app features that related to general “settings” options (e.g., snooze option, sound effects), usability issues, or cost. Based on a review of the mHealth apps, we developed a list of functional features [44] (Table 1).
We extracted the information about the nine MS-specific apps from the app stores (iTunes and Google Play) and the app websites and downloaded all the apps to explore their functionality and to manually assess for the presence of the previously identified features (Table 2). In addition, we identified other health- and wellness-related features found in these mHealth apps for people with MS (Table 2 and Table 3). In the majority of these mHealth applications, most of the functional features were listed on the homepage. Some additional features were listed within app settings. For example, MS self app had Journal, Reports, Fact cards, Goals, and Achievements listed on the homepage with the Info and Settings. Settings listed Weather Information and Journal Insights as Add-on Features and Syncing the app with Fitbit as Registered User Features. My MS Manager had all nine features on the homepage: My Treatments, My Lab Results, My Journal, My Exacerbations, My Side Effects, My Medical History, Education, My Charts, and My Fatigue. We used a binary system to assign either 1 to indicate that a feature was present in an app, or 0 to indicate the absence of a feature.
Table 2.
MS-specific mobile apps, number of their functional features, user ratings, and operating systems
| MS mobile applications | Number of functional features | User ratings | Operating system | References |
|---|---|---|---|---|
| MSAA – My MS Manager | 9 | 3 |
iOS Android |
My MS Manager™ (2012). http://mymsaa.org/manage-your-ms/mobile/. Accessed 11 Dec 2014 |
| MS self – Multiple Sclerosis (MS) App | 8 | 4.5 | iOS | MS self – Multiple Sclerosis (MS) App (2015). http://www.moveoverms.org/multiple-sclerosisapp-ms-self/. Accessed 03 Oct 2016 |
| MySidekick for MS | 8 | 2.5 | iOS | My Sidekick for MS (2012). https://www.abovems.com/. Accessed 2 June 2015 |
| My MS Conversations | 1 | 3.4 |
iOS Android |
My MS Conversations™ (2014). https://play.google.com/store/apps/details?id=com.syandus.ms_patiented_01&hl=en. Accessed 29 Jun 2015 |
| MS Journal | 2 | 3.5 | iOS | MS Journal (2014). http://tensai-solutions.com/app/ms-journal/. Accessed 27 Oct 2014 |
| My Multiple Sclerosis Diary | 2 | 4 | Android | My Multiple Sclerosis Diary (2015). https://play.google.com/store/apps/details?id=com.appxient.mymsdiary&hl=en |
| SymTrac | 3 | 3 |
iOS Android |
SymTrac (2014). http://www.symtrac.com/. Accessed April 2014 |
| MS Buddy | 1 | 3.5 |
iOS Android |
MS Buddy (2016). http://www.healthline.com/health/multiple-sclerosis/ms-buddy. Accessed 14 Nov 2016 |
| MS Attack | 2 | 4.5 |
iOS Android |
Multiple Sclerosis Attack App (2014). https://itunes.apple.com/us/app/multiple-sclerosis-attack/id883546897?mt=8. Accessed 27 Oct 2014 |
Table 3.
Functional features in MS-specific mobile apps
| Functional features | Number of MS mobile applications in which features are present |
|---|---|
| Journal (health and wellness self-reporting) | 5 |
| Health and wellness tracking using wearables | 2 |
| Creating and sharing the reports | 5 |
| MS education | 5 |
| Goals | 1 |
| Reminders | 1 |
| Connecting with individuals with MS (community forum) | 1 |
| Fun achievements (gamification) | 1 |
| Medication/injection adherence with reminders | 4 |
| Journal insight (journal data observations) | 1 |
| Weather information | 1 |
| Add a treatment | 1 |
| Add lab results | 1 |
| Add exacerbations | 1 |
| Add side effects | 1 |
| Add medical history | 1 |
| Fatigue survey | 1 |
| Exercises | 1 |
| Notepad | 1 |
| Memory exercise | 1 |
| Suggested questions for doctor appointment | 1 |
| MS clinic location | 1 |
Results: Functional Features in MS-Specific Apps
Three apps were found only in iTunes, 1 was found only in Google Play, and 5 were found in both app stores. The user rating range was 2.5–4.5, with the mean rating of M = 3.54. I identified 23 functional features in 9 apps. The median number of features per app was 2.0 (interquartile range 6.5). Only three apps had ≥ 8 features (Table 2).
The most common features were health and wellness self-reporting (journal), creating and sharing the reports, and MS education. Each of these features was present in 55.56% (5 out of 9) of the apps. The next one is medication/injection adherence in 44.44% (4 out of 9) of the apps. Health and wellness tracking using wearable devices was offered in 22.22% (2 out of 9) of the apps. The remaining 17 features are each present in only one app (11.11%) (Table 3).
Journal is a most important feature for people with MS that allows users to self-report daily mood, symptoms, mobility, activity, energy, disability, and pain level at one place. This functional feature serves as a notebook, which individuals with MS use daily to self-report their symptoms and related information. Some apps offer to track data using wearable devices. This feature is integrated with Journal to have complete health information stored in one place. Journal Insights are observations based on data analysis of the previous journal entries to identify trends and patterns of their symptoms and to help them understand what affects them. Most of the apps have the feature for creating the reports based on the health and wellness data and sharing these with the healthcare providers. Another important functional feature is the social forum, which is present only in MS Buddy that connects individuals with MS with another person who has MS to exchange their experiences. In addition, there are some apps that offer MS-related education and resources (Table 3). Medication adherence is provided in four apps, and in two of those apps offer injection adherence as a single functionality. There are 15 additional functional features that are present in only one app.
Summary
Half of the apps for individuals with MS focus on the health and wellness self-reporting, creating patterns and charts out of those data, and having the option to email that information to the healthcare providers, caregivers, family members, and others (Table 2). One third of them tracks injection and medication adherence. Two of them are educational apps, and one is a social app for individuals with MS. A few of these mobile apps have more than one functional feature. These MS-specific mHealth applications are limited in their functionality as they offer similar features across the apps and a small number of features within an app. Moreover, none of the apps for people with MS present the holistic and integrative app that provides their users with a variety of the features including the community forum, telehealth, gamification, and goals, next to the health and wellness self-reporting and tracking of data, creating and sharing reports, and MS education. All apps fail to offer a complete comprehensive health and wellness picture based on its input data and a way to self-manage MS. These apps fail to deliver a comprehensive self-management tool for end-users’ to understand their own MS by monitoring all the factors that possibly contribute to the symptoms and keeping track of the changes and what causes them to identify trigger factors and patterns, and by having all that data available to their healthcare providers with the alerts to them in a case of emergency or a special need.
Needs Assessment Study
In this paper, we defined aging with MS as having been diagnosed with the condition for at least 5 years. Total of 8 participants diagnosed with MS at least 5 years ago participated in two focus groups. Focus groups were used as a widely used self-contained research method for gathering qualitative data [55–57]. After discussing their self-management habits, they were introduced to the three selected mHealth applications. We chose My MS Manager and MS self for this study as the two most relevant apps for individuals with MS with the highest ratings, widest overall functionality, and the biggest number of features that included health self-management through Journal entries, generating and sharing the reports based on those entries, and education (Table 2 and Table 3). My MS Manager had 6 additional (total of 9) functional features including fatigue survey, treatment/medication adherence, lab results (health records), medical history, reporting side-effects, and exacerbations. MS self had 5 additional (total of 8) functional features, such as health and wellness tracking using wearables (Fitbit), Journal insight, goals, fun achievements (gamification), and weather information. In addition, we chose iHealth [58] as an integrated mHealth app that connects to wireless health devices (e.g., blood pressure monitor, glucometer, scale) via Bluetooth to remotely monitor the health of the general population. This app was introduced to the participants because of its use of telehealth with the purpose to enrich the discussion and expand the possible ways of the health and wellness self-monitoring due to the limitations of the functional features in MS-specific applications.
The focus of the discussion was to identify the health and wellness self-management needs in individuals aging with MS, related specific functional features in mHealth apps that can address these needs, and improve the design of new MS-specific mobile technologies.
Participants
Participants were recruited through the CATEA Consumer Network (CCN) at Georgia Institute of Technology and snowball sampling. Two groups of 4 participants with a total of 8 participants were recruited. The inclusion criteria were that participants be of age 18 and older and that they were diagnosed with MS at least 5 years ago. The characteristics of the two groups of participants are presented in Table 4.
Table 4.
Characteristics of focus group participants
| Focus groups | Female | Male | Age range (years) | Mean age (years) |
|---|---|---|---|---|
| Focus group 1 | 4 | 0 | 54–67 | 59.50 ± 6.14 |
| Focus group 2 | 2 | 2 | 33–59 | 43.75 ± 11.81 |
The background questionnaire was administered where participants self-reported their number and types of functional limitations (Fig. 2, Table 5).
Fig. 2.
Number of functional limitations in participants
Table 5.
Types of functional limitations in participants
| Focus groups | Functional limitations | ||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Fatigue | Dexterity | Pain | Balance | Gait | Numbness | Difficulty walking | Speech | Tremor | Foot drop | Lower extremity weakness | |
| Focus group 1 | 2 | 1 | 1 | 1 | 1 | 1 | 1 | 0 | 0 | 0 | 0 |
| Focus group 2 | 0 | 0 | 0 | 1 | 2 | 0 | 3 | 1 | 1 | 1 | 1 |
Use of mHealth and MS-Specific Mobile Applications
We asked the participants to rate their use of mobile apps (e.g., Weather Underground: Forecast [59], Skype [60]), mHealth apps (e.g., iHealth, Health [61]), and MS-specific applications (e.g., My MS Manager, MS self) on a scale from often, frequently, occasionally, very infrequently, to never (Table 6).
Table 6.
Use of mobile, mobile health, and MS-specific applications in focus group participants
| Often | Frequently | Occasionally | Very infrequently | Never | ||
|---|---|---|---|---|---|---|
| Use of mobile apps | Focus group 1 | 0 | 3 | 1 | 0 | 0 |
| Focus group 2 | 0 | 3 | 1 | 0 | 0 | |
| Use of mobile health apps | Focus group 1 | 0 | 0 | 1 | 3 | 0 |
| Focus group 2 | 2 | 0 | 1 | 1 | 0 | |
| Use of MS-specific mobile apps | Focus group 1 | 1 | 0 | 0 | 1 | 2 |
| Focus group 2 | 1 | 0 | 1 | 1 | 1 | |
Overall, in both focus groups, participants reported frequent and occasional use of mobile apps, less frequent use of health apps, except for 2 participants who reported that they use these apps often, and even less frequent use of MS-specific apps, except for two participants who reported they often use this type of apps. Three participants reported they never used MS-specific app, and two used them very infrequently.
Computer and Touch Screen Experience
The participants self-reported their computer and touchscreen experience on a scale from 1 = none, 2 = novice, 3 = intermediate, 4 = advanced, to 5 = expert. The level of computer and touchscreen experience was presented in Table 7.
Table 7.
Computer and touchscreen experience in focus group participants
| Focus groups | Computer experience | Touchscreen experience | ||
|---|---|---|---|---|
| Mean, M | Standard deviation, SD | Mean, M | Standard deviation, SD | |
| Focus group 1 | 4.25 | 0.96 | 4.00 | 0.82 |
| Focus group 2 | 4.00 | 0.82 | 4.25 | 0.50 |
Accessibility Features
The participants reported the use of the accessibility features on their smartphones (Table 8).
Table 8.
Use of the accessibility features in focus group participants
| Focus groups | Accessibility features | ||||
|---|---|---|---|---|---|
| Large text size or zoom | Voice-over | High contrast or inverted colors | Assistive touch | No accessibility features | |
| Focus group 1 | 3 | 1 | 1 | 0 | 1 |
| Focus group 2 | 3 | 2 | 0 | 1 | 1 |
Focus Group Procedure
Participants signed the informed consent form approved by the Georgia Tech Institutional Review Board (IRB) and completed demographic background questionnaire first. Second, they participated in focus groups where participants discussed their needs related to the self-management of health and wellness. Third, they were asked to talk about the possible functional features in mHealth apps that could help address those needs and the opportunities for development of new MS-specific mobile technologies that would help address their identified needs. Fourth, they were introduced to the three apps, My MS Manager, MS Self, and iHealth, and their functionalities were explained in detail to them for the purpose of further discussing the new ideas for the functional features in mobile technologies. For example, participants used the remote blood pressure monitor with iHealth app to understand the functioning of the wireless health monitoring devices. They had time to explore and ask the questions about three introduced apps in a focus group. The study was video recorded and lasted around 150 min. All participants were compensated $20.00 for their time and $5 for the travel to Georgia Tech.
Specifically, we asked participants how they manage their health and wellness, what they need and use to self-manage health and wellness daily, what functionalities they would like to have in mobile health and wellness apps that would help them to address those needs, and why (suggestions were given after the discussion was exhausted, such as entertainment, games, achievements). In addition, we probed participants with more specific questions to enrich the discussion. We asked them whether they prefer health tracking over self-reporting and which health measurements they would like to have monitored using the wireless health monitoring devices. Moreover, we asked participants to discuss the existing functional features within the MS-specific and health apps if they did not already talk about those to exhaust all the possible functionalities of the mHealth apps. To further motivate the discussion, we asked which features their ideal MS app would have, what would be its main feature, and how often they would use it.
Data Collection and Analysis
An inductive approach was used for the focus group data analysis. All notes and transcripts were collected and summarized into one document. Atlas.ti was used for data analysis. Two research members generated a preliminary set of codes. Pre-set codes were used for the initial data coding, and emergent codes came out from the secondary reading of the document. The pre-set codes were related to the known functional features (i.e., upper-level themes) in the existing mobile apps. For example, Mood, Diet, Symptoms, Sleep, and Activity (health and wellness self-reporting and tracking), Health information to reports (creating and sharing the reports), MS news, MS research, Health and wellness tips (MS education), Social support of people with MS, Reminders, and alerts were used as the upper-level pre-set themes. In vivo coding was used to generate more upper-level themes. Medication adherence, MS-specific exercises, Health records, and Games and VR emerged from the secondary review of the transcript (Table 9). In addition, a number of other themes emerged, such as Geolocation, Weather update, Telehealth, and Personalization. This model was applied by starting with the familiar functional features in current mobile apps, and by expanding it with the ones participants found useful that does not exist in the current apps. The lower level functional features were grouped into related functionalities. For example, mood, diet, sleep length and quality, symptoms, activity, weather update, and geolocation were grouped into health and wellness self-reporting and/or tracking feature, called journal or diary. MS-specific exercises and personalization emerged as functional features and were not mentioned as health and wellness needs.
Table 9.
Code document table for the upper-level themes (i.e., needs) and their grouping based on the functionality
| Needs | Number of codes | Functional features | Number of codes |
|---|---|---|---|
| Mood | 11 | Journal (health and wellness self-reporting and/or tracking) | 48 |
| Diet | 10 | ||
| Sleep length and quality | 7 | ||
| Symptoms | 7 | ||
| Activity | 4 | ||
| Weather update | 3 | ||
| Geolocation | 6 | ||
| Health information reports | 26 | Reports (creating and sharing the health information) | 51 |
| Medication adherence | 11 | ||
| Health records | 14 | ||
| News, research about MS | 8 | MS Education (MS resources, education, news research, tips) | 13 |
| Health and wellness tips | 5 | ||
| Reminders and alerts | 9 | Reminder and alert systems | 9 |
| Social support of people with MS | 22 | MS community forum (social support of people with MS) | 22 |
| Health tracking | 10 | Telehealth (health tracking) | 10 |
| Virtual experiences | 7 | VR and games (virtual experiences and games) | 7 |
| MS-specific exercises | 5 | ||
| Personalization | 4 |
Results and Implications for Design
In this section, the needs for self-managing health and wellness among people with MS and the opportunities to meet those needs with new mobile technologies and specific functional features in mobile applications are reported.
Health and Wellness Needs for Self-Management
Participants talked about a number of needs for health and wellness self-management, which were grouped into 7 main categories.
Health and Wellness Self-Reporting and Tracking
Individuals with MS reported that they wrote daily notes, called journal, diary, or report, about their symptoms, exacerbations, and remissions, and the factors that affected them. This is an important health self-management activity they perform on a daily basis. The health and wellness logs helped them learn about the condition, track the progress of MS, be more aware of themselves and their health, and accept having MS.
Participants identified the following factors that need to be monitored daily: diet, mood, activity, sleep, weather, and geolocation together with the symptoms and a part of the body that is affected. For example, P1.1 commented that their diet was “important because of relapses” and P2.2 self-reported “which food makes me more fatigued.” P2.4 said that “mood, how I am feeling, a weaker area of the body” is important to report with symptoms, and that “mood at the beginning and the end of the day” should be noted down. Similarly, P2.2 commented that it would be beneficial “to track your emotions, what triggers you.”
Creating and Sharing the Health Information, Including the Medical Records and Medications
The primary purpose of collecting these daily health notes is to take these continuous reports to the neurologist so that they could discuss and better understand their condition. Their current practice is to manually collect the notes and bring those to the healthcare provider during the appointment. Participants expressed the need for a more efficient and easier way of communicating the health information to the healthcare professionals.
The secondary purpose of those notes is to help them understand the condition, track the progress of MS, and accept having it. Additionally, they needed a way to learn about the factors that might cause the exacerbations and worsening or decrease of the symptoms, as commented by P2.2:
(I note down) what increases my fatigue, what I eat. I just got a journal. Anything to manage MS is a positive (thing). One day I just rest, another day I have three tasks. What I like to do (is to) keep track of my saturation level, infusion saturation level; record of going up or down.
Additionally, participants discussed that their medical records helped them visualize the progression of MS and accept having the condition. After being diagnosed with MS, these individuals go through a period of denial. This phase can last many years. However, they understood the importance of the acceptance of the condition, as stated by P1.4:
Medical records are very important because of that image; (it) puts it in perspective.
Medical records helped them to understand an occurrence of the exacerbations and symptoms, as P1.4 stated:
Blood work information (is important). Based on it (to monitor) progression, painful flare-ups.
Moreover, the majority of the participants thought that medication adherence was essential. They discussed the importance of recording all the medications and supplements, their schedule, whether they took those, and how they felt after that. The importance of medication adherence is addressed by the World Health Organization [62]. Disease modifying therapy for multiple sclerosis (MS) and other long-term therapies require high levels of medication adherence to deliver adequate outcomes [63]. However, researchers reported low levels of adherence to four disease modifying drugs (DMDs) in individuals diagnosed with MS.
Reminders in the form of text messages have improved adherence in chronic conditions [64]. Recently, there have been a large number of mobile applications developed to improve medication adherence [65]. However, the researchers found that the majority of these apps do not have the desirable features and are considered low quality. Moreover, only two apps for individuals with MS incorporate medication adherence into the features, My MS Manger and MySidekick, and two other apps, My MS Diary and MS Journal, focus solely on injection adherence.
MS News, Research, Tips, and Resources
As advised by the World Health Organization [2] and the Consortium of Multiple Sclerosis Centres [14], individuals with MS should take charge of decisions related to their health and life. Moreover, researchers [66] reported that the education program caused more independent decision making in individuals diagnosed with relapsing MS.
Individuals aging with MS discussed the importance of access to the reliable latest research and news about MS, resources, and the health, wellness, and lifestyle tips that would help with the condition. Participants in the second focus group discussed the need for the MS-related resources. P2.4 was a new resident in Georgia and wanted to know where “to find medical equipment, providers.”
Additionally, they complained about the quality and the content of the MS-related news and research. For example, P2.3 stated that:
Stats on MS are terrible. It is mostly about drugs, not about MS.
Reminder and Alert Systems
All eight participants talked about the need for a reminder and gave examples of their usage. P2.2 needs a place “to get things done, to remind me. (For example,) a to-do list to manage the day.” P2.4 wanted to “set a reminder for everything: vitamins, daily things, (and) journal.” They talked about a vibration reminder with the purpose to motivate them to perform an activity and to exercise. P2.3 talked about the benefits of the medication reminders they had and explained the tactics they used to better support their medication adherence and provide an additional reminder:
An alarm reminds me to do it (take medicine). My wife’s phone is a backup. I type the message (to her).
Social Support of People with MS
Having and preserving social connections presents an important aspect that increases QOL in individuals with MS and older adults [3, 67]. Participants in this study were very interested in communicating with other individuals with MS around the world to exchange their experiences of managing and dealing with MS and to get support for everyday challenges with the condition. P2.2 discussed:
Yes, emotionally there are so many things (going on). Being a part of a support group would be helpful, so other people see how I’m doing with MS. I would go to someone else and (we could) help each other.
Telehealth: Health Tracking
Telehealth has been widely accepted, and its importance in promoting and protecting health is reflected in the growth of health tracking systems and applications [68, 69]. After participants discussed remote tracking of their wellness data via Fitbit or similar popular consumer wearable device (e.g., sleep length and quality, number of steps, stairs, and miles, calories), they introduced a need to measure and track other health data. All participants found the need to measure the blood pressure, heart rate, and other vitals very important.
Virtual Experiences
Participants talked about their experience of having MS and an emotional side of their journey. They discussed how mobility impairments make them feel different and how people treat them in a special way or do not notice them at all. P1.4 stated that:
While driving a car, no one knows I have MS. I just want to be like everyone else.
They continued the discussion by expressing the need for experiencing the activities and events they used to be able to perform and attend with their friends and family. The topic of VR was first mentioned by P1.2 during this conversation. This participant had previous experience of playing a VR biking game, and they described this exciting event and how wonderful it felt to be able to perform certain activities again. The other 3 participants in the first focus group agreed that VR games would be of great importance and benefit to them. They wanted to remember what it feels like doing certain outdoor activities. P2.2 stated that:
I get tired fast during outdoor activities, and I get frustrated a lot because of adjusting to walking.
Having an opportunity to do all these physical activities using the VR was incredibly important to them. Individuals with MS wanted to feel the same and as able as other people, at least in the virtual world.
The Opportunities to Meet the Needs Through Mobile Technologies and Specific Functional Features
Additionally, participants discussed possible solutions to meet and manage those needs through mobile applications. They identified many features that could be adapted or developed, which were grouped into 9 main categories, with the last tenth category presenting their need for the holistic self-management tool that includes the previous features. The first 7 categories represent the potential means of addressing the identified health and wellness needs. The last two functionalities were identified during the discussion about the mHealth app design.
Journal
The participants identified a number of factors that have to be monitored together with their symptoms, relapses, and remissions, which should be used to inform them about the progress of MS and provide an overall picture of their condition. They need to learn what affects and causes the symptoms and exacerbations. These everyday self-management tasks include self-reporting or preferably tracking (using wearable devices) of their mood, diet, sleep, activity, whether, geolocation, medications, vitamins, symptoms, and exacerbations. All this information should come together to provide individuals aging with MS with the comprehensive tool for understanding their condition on a daily basis and over time and how best to manage it.
While talking about their needs for health and wellness self-management, some participants suggested that mobile apps could be used as useful tools for self-reporting and tracking the health data instead of taking the notes. P2.1 stated:
I found first a journal (to write what I) eat, (how I) sleep, weather, temperature, and how I felt with this. An app would be a very good tool to help with this information. (For example,) heat sensitivity; when it gets warmer, I have more fatigue.
They took time to discuss self-reporting and tracking features and thought that “journaling” should be the main functional feature of the app. Tracking was preferred to self-reporting. For example, participants wanted to track their sleep to know how long and how well they slept over time because they have a hard time getting back to sleep. Activity tracking was discussed as the beneficial aspect of the wellness tracking system.
Additionally, they discussed the importance of the weather and geolocation features. It was very important for them to understand what affects their symptoms and in what way. Weather is critical for an understanding of the condition because of the effects of the temperature on their fatigue. They need to know if their symptoms happen “because of geographical (location) and weather reasons” (P1.1) or because of their diet, sleep quality, and other factors. They suggested that the app provides feedback about their current location so that taking the trips and home location can be associated with the symptoms.
In addition, they discussed the ways the health and wellness information should be self-reported. All participants preferred the use of the emoticons with a scale. For example, they would like to report the symptoms and mood via “a face for fatigue with a scale of 1 to 10” (P2.1).
Reports
The participants wanted to have the self-reported and tracked data (using wearable devices) aggregated and presented into charts and graphs so that they can see how MS progresses, learn the patterns, and understand what the factors that affect their condition are. They required this information to be sent to the healthcare providers, family members, and caregivers. Currently, participants collect this data manually and bring it to their neurologists during every visit. Therefore, having the option to send these reports electronically would help them with data accuracy and time-saving. In addition, they wanted to have their medical records available on the app to visualize the progress of MS, understand the condition better, and accept having the condition. Moreover, medication adherence was found important by the majority of the participants.
Health and Wellness Reports
The participants commented that they need “holistic information” (P1.1) as app feedback (i.e., reports, charts). They need to understand what and how many of the self-reported health and wellness data impact their symptoms and affect the relapses and the remissions, as commented by P2.2:
(I need) construct on data we put in, reports on data we put in; I’m already writing it down.
All participants asked for the report tool to be available to themselves, healthcare providers, and the caregivers. This tool should sum up all the self-reporting and tracking features and provide an overall picture of their health on a daily basis. P1.1 summarized:
If you can print a report and send data to doctor, (that) would be helpful. Generate an overall report to a doctor. Incorporate other accidents and surgeries in a complete report. Patient portal with a doctor to capture all (the) information.
Participants wanted to print, email, and/or send the reports to their caregivers, family members, and healthcare providers. They did not focus on the nature of the reports and the possible differences in the specifics of the output in this information tool to different users.
Overall, the visualization of the condition progression is incredibly important to them so they can learn about it and accept having MS.
Medical Records
Availability of health records is vital in helping individuals with MS realize whether and how MS progresses. The health records help them accept MS, as described by P1.1:
I can see his (doctor’s) notes. I find that helpful. It allows me to be more proactive. It doesn’t update real-time. It would be helpful (if it does). A doctor is more involved that way. I like to see how MS progresses. I know that it progresses: from the notes on the first MRI to (the) last one, office visits. It helped me mentally accept it.
One of the problems with the availability of health records within an app is privacy and data security. All participants in the first focus group appreciated the idea of having their medical records accessible and available within the app. After a neurologist explained the benefits of having this data and recommended the usage of an online tool for its access, P1.2 understood its benefits and wanted to use it. However, all the participants in the second focus group expressed concern over having their medical data on the app. To four of them, health data are personal, and they are afraid of having their medical records exposed and vulnerable within an app. P2.2 discussed her view on the data security:
Medical records are personal. My preference is in mail vs. having it on the phone, so someone can see it. MRI (records) not on the phone. I’m trying to accept having MS so having medical records is a reminder. I like accessibility, but I like privacy.
Medication Adherence
In this research study, medication adherence was found important by five out of eight participants. They wanted to keep a record of all the medicines and supplements they took and to know how they felt after taking them. This feedback could help them in deciding about the possible vitamins and change of medication regime. P1.3 suggested a possible use of the medication adherence tool as a feature that would let the users know whether certain medications can be taken together, and if the condition prevents them from taking a number of drugs:
Does either of apps has (a feature): if we put up medicine information and if medicine conflicts the app tells you that? I don’t have time to call. If an app has something like that you put medication name and app pops up with information that that medicine does not interact well with another medicine and similar. (It would be) great to have (information about) what medications affect. For example, a pharmacy app (about) what medications react with what other ones. If you have a condition and take medicine, some other food and medicine may not interact well with them. If that app has that feature, I would use it. How medication affects you, vitamins, (other) medication, and food? (It would be good to know the) side effects of drugs you are taking. How does it affect your mood? Drugs you are taking: are they affecting and what?
Participants discussed the use of wearable devices as the reminder tools for taking the medications as well as the benefits of medication adherence apps, as P1.2 commented:
It would help make it (taking the medications) more regular (if taken) with my pill dispenser. I like something that would wake you up vibrating. (For example,) medical alert bracelets with name and condition, Fitbit with medical information that can be pulled up by emergency people, ICE (in case of an emergency app).
Additionally, participants reported that having the vitamins on the medications list would be beneficial to them. The list should have all relevant information, including the medication side-effects, dosage, users’ comments on the effectiveness of every medication and supplement, and similar. P2.2 commented:
Medicine with side effect would be useful; keeping up with different medications and supplements they (doctors) prescribe. App to keep in mind when I took this (medication), this is how I feel, I feel I can supplement this.
MS Education
We found that individuals aging with MS wanted easily accessible latest MS research, news, and resources, with the health, wellness, and lifestyle tips, as a source of reliable information about MS. All participants wanted to have valid health information on managing MS symptoms. P1.3 wanted to have a “health information with a link, information on health tips, lifestyle tips, and tips for healthy brain and cognition.” P2.3 wanted to have a feature that allows them to call Multiple Sclerosis Association of America (MSAA) to ask whom they recommend as a doctor.
Reminders and Alerts
The participants discussed the importance and expressed their interest in having the reminders and the alerts to assist with medication adherence, condition management, and other daily tasks.
In addition, participants discussed the importance of the medical tools with alert features. Four participants in the second focus group wanted a feature similar to “medical alert bracelets, with name and condition. Something like Fitbit with medical information that can be pulled up by emergency people” (P1.2).
MS Community Forum
Participants talked about the need to communicate with other people diagnosed with MS all over the world to hear about their ways of managing the condition, treatments, and coping skills. Additionally, they wanted support for and a real understanding of their daily challenges with MS. They preferred video calling to talking and texting, as a way of connecting with other people. Moreover, participants suggested having a social tool for activities that connects them with others with MS who would join them in their hobbies and recreation.
All eight participants found having the social support available within the MS-specific app incredibly useful and commented that it would be beneficial “to share the information with other people with MS” (P1.1) and experience “how people outside of US manage MS” (P2.2).
Talking with headsets was preferred compared to chatting because of the motor and dexterity issues while seeing someone via video call (e.g., Facetime, Skype) was the most favored option for the communication. P1.4 suggested that:
If you are online, there is an indicator (that) you are online, and you can choose what you want: chat (or) talk. It would be fabulous to experience how is MS around the world and have a serious conversation with people who know what you are going through.
P1.2 wanted a tool that would “synchronize with someone else to support each other (and) walk together.”
Telehealth
The individuals with MS thought that the possibility of remotely tracking their health and wellness data represents an important and convenient tool, especially if an app is connected to Fitbit or similar popular consumer wearable device. All participants found the experience of measuring the blood pressure enormously beneficial. They found the idea of remotely tracking their vitals to be valuable, time-saving, and convenient. P2.3 was already using Fitbit to track the activity (e.g., walking, biking) and sleep and found it incredibly helpful:
I love it. It does everything for me. It is not that accurate: the miles, steps. It tracks how much I ride the bike. It doesn’t fit well the number of miles. It records sleep, how long and how well (I sleep). I had it for three weeks.
The significant finding in this study was that in addition to the remote tracking of the blood pressure, weight, heart rate, sleep, and activity that were present in iHealth app, participants talked about the importance of tracking the tremor. Moreover, they expressed a strong opinion about wanting to use wearable devices to track their data as much as possible so that they do not have to self-report and enter data manually because of their motor impairments.
VR and Games
Half of the participants wanted to have VR and games available to them within the app. They realized that VR would give them an opportunity to perform the activities that would be challenging in the real world. Participants in the first focus group loved the idea of virtually performing the activities they were unable to do in a real world, such as biking, fishing, camping, and similar. P1.2 commented:
I like the game aspect. We want others to bike virtually. It (virtual biking game) gave me such a sense of freedom and liberation. Also, virtual fishing and camping. In a virtual world, I would do it.
When asked about the game as a mobile app functional feature, these four participants in the first focus group thought that playing the games would be beneficial to individuals with MS. They thought that the games should be designed to help them with MS symptoms, as stated by P1.1:
If (the game is) for MS, if it would be beneficial to MS.
The idea of playing the games was very interesting to them. When asked if they would use the medical tests in the form of a game, the same four participants stated they would be interested in doing it.
The other four participants in the second focus group thought that the VR and game functional feature would be “too overwhelming” (P2.4). They thought that it goes beyond what the MS app should stand for, as stated by P2.1:
“No, I want more having MS data, the core value.”
MS-Specific Exercises
Participants wanted to have the exercises specific to the physical needs of people with MS within an app, as P1.4 commented:
I want an app that I can use exercises. (For example,) exercise tips for wheelchair bound, (such as) simple moving around, shrugging your shoulders, moving your hands. Vibration (would be helpful) to remind you to move a little.
Personalization
Individuals with MS wanted to have personalization and customization available to accommodate the differences in opinions, needs, and contexts of use. They wanted to set up the pace of the interaction and their preferences and to prioritize certain functional features. P1.1 talked about self-learning and adapting feature:
Self-learning: it (the app) would know what I use all the time.
Holistic App
Overall, participants wanted a single comprehensive app for self-managing MS that would integrate all the features they discussed. They needed an app that would visualize the condition patterns and timeline so that they could better understand the factors that affect it. All four participants in the second focus group concluded that they want to have one app with a number of functional features, as commented by P2.1:
One app is great with a journal, alarm, reminder, reliable information, to-do list.
Additionally, participants discussed the availability of the apps on both operating systems (i.e., iOS, Android) and a possibility of having the web version they can use on their computers. P2.4 concluded about the importance and role of health and wellness self-monitoring apps:
These things help me be aware of myself.
Discussion and Future Work
The goal of this qualitative study was to identify the specific needs for self-managing health and wellness among the individuals aging with MS and to find the opportunities to meet those needs through the development of future MS-specific mobile applications. We found out that individuals with MS write physical notes detailing the health and wellness information (e.g., mood, current weather, sleep length and quality, activity level, symptoms, remissions, and similar) on a daily basis and take those logs to the neurologists during every visit. These notes help them be aware of themselves and their condition. More importantly, the logs help them understand what affects and causes their symptoms and exacerbations. The participants suggested that mobile technologies could be used instead of note-taking to help them with this type of health self-management. This critical finding opens the door for innovation in the field of mobile technologies related to ways of tracking and self-reporting health and wellness data in people with MS. People with MS need to track and report wellness data, such as mood, activity, sleep, and others, similar to people with other chronic condition. However, what distinguishes individuals with MS from others with a chronic condition is the importance of monitoring their symptoms, relapses, and remissions together with other wellness, weather, and geolocation data to understand how these side factors affect their immediate health. They want to know what affects their symptoms and causes exacerbations to possibly prevent or decrease their occurrence, intensity, and distress.
In this study, participants discussed a number of needs for the health self-management including health and wellness self-reporting and tracking, creating and sharing reports, including medical records and medication adherence, availability of MS news, research, tips, and resources, reminder and alarm systems, social support of people with MS, telehealth (health tracking), and virtual experiences. During the focus group conversations, they talked about the potential support for these needs through mobile technologies and specific functional features. Each of the identified needs resulted in a feature, such as a journal, reports, MS education, reminder and alerts, MS community forum, telehealth, and VR. Additionally, discussion about the VR games expanded that functionality into VR and games, which would include games that improve cognition and balance. MS-specific exercises and personalization emerged as additional functional features that were not mentioned as specific health needs.
Individuals aging with MS discussed a need for the holistic app that represents a complete health and wellness system and a way to self-manage MS. A comprehensive self-management app would help them understand their condition by recognizing and managing all the factors that possibly contribute to their symptoms and exacerbations, and by keeping records of all the changes and what causes them to identify trigger factors and patterns. Participants aging with MS expressed the need for an integrative app, which helps them log and track health and wellness data, keeps the MS data in one place, including medical reports and medications, sends the report with all this information electronically to help them with data accuracy and timesaving, provides reminders and alerts to assist with medication adherence, daily tasks, and emergencies, communicates with other individuals with MS to get the social support, has all the relevant MS resources, news, and research, connects with wireless health devices to ease the health management, and provides the games that improve their cognition and balance within a personalized and customizable system. Moreover, the stored data should be available to their healthcare providers, family members, and caregivers to alert them in a case of an emergency or a special need. However, they had a concern about data security and privacy related to having cloud-based and online medical reports.
The participants identified valuable functional features they need within the integrative mHealth app that are not present in current mobile applications for people with MS. For example, they discussed sending alerts to the healthcare providers, caregivers, and family members in a case of an emergency, which is a unique and critical feature that is not present in any of the apps on the market. Social support is not provided within any of the current apps, except as the main functionality of MS Buddy, a stand-alone app that focuses on the communication among others with the condition. Another significant finding unique to individuals with MS that can be applied to others with motor impairments was that half of the participants wanted to play VR games that would assist them with performing and participating in the physical activities, which they cannot accomplish in the real world. There is a great opportunity in VR to help people with MS feel active and same as other people by playing the variety of games that mimic certain activities, such as biking, and skiing. The other half did not want to use this technology, which may be due to a lack of familiarity with it. Additionally, individuals aging with MS found that remote monitoring of their vitals (e.g., blood pressure, pulse, oxygen) and wellness, such as activity (e.g., number of steps, miles, and floors) and sleep (e.g., sleep quality and length), can help them better manage MS in a convenient and time-saving way. The field of VR and telehealth present critical opportunities to meet important needs of people with MS. VR is already exploring possible activities and applications that benefit individuals with disabilities and an aging population [19–41]. Telehealth has gone through a breakthrough moment, and it continues to advance the technology use and to seek new applications [70].
We found no difference in reported health and wellness needs and functional features between the participants based on their frequency use of mobile apps and functional limitations. However, there was a difference between the responses among two groups related to the security and privacy of health data and VR gaming. We assume this discrepancy happened because of the group interactions and dynamics. The difference in responses about VR might have happened because of the fact that in the first focus group one of the participants came up with this topic after having an experience with it and the other participants understood it better after the exposure to this elaborate description by one of the group members.
Participants did not discuss goal setting (gamification) as a possible feature. Researchers have reported that goal setting of specific difficult tasks leads to a behavior change and higher performance compared with a lack of or vague goals [71]. Additionally, they did not talk about the availability of emergency contacts within this type of app.
We presented the participants with three apps, which we found a most representative of the health and MS-specific apps on the market. However, we had a limited time for participants to explore the three apps and comprehend all their functionalities. Longer exposure to these apps would benefit the study as three participants who never used MS-specific apps would get a better understanding of their capabilities.
The drawback of the study was the relatively small number of groups (i.e., two focus groups). However, in a case of studies with individuals with disabilities, researchers have argued that even a small number of participants can help generate plenty of rich qualitative data. The study participants had different impairments and ranges of limitations, which infers that the results of the study can be generalized. This study presents a valuable set of data that can be used when designing future mobile health and wellness applications. However, because of the relatively small total number of participants (i.e., eight individuals aging with MS), and a limited ability to draw strong general conclusions, the future work will include a follow-up study to test the usefulness of the identified functional features. First, a mHealth app, MS Assistant, will be designed to incorporate all the features identified in this study. Second, its usefulness will be tested with individuals aging with MS to understand whether this app and its functionalities meet the needs for health and wellness self-management of its target population.
This case study focused solely on the health and wellness self-management needs among individuals aging with MS related to the mobile technologies. However, the findings of this study can be generalized and applied to the design of mHealth apps for other chronic conditions if the appropriate minor adaptations are conducted to account for the differences between MS and the chosen condition. We found that health and wellness tracking and self-reporting were core features of the mHealth apps. Participants wanted personalized information and insights about their condition and self-management. Additionally, they wanted to share this information with certain people, especially with their healthcare professionals for the purpose of time-saving and efficiency. Education, reminders, and community forum were found incredibly useful to our participants and supported by the previous studies for other conditions [44]. In our study, we found that telehealth, VR games, and condition-specific exercises present potential valuable features in health apps. Although popular and studied functional features, such as goals and gamification (i.e., achievements) were not discussed by the participants in this study, those two functionalities were proven to be valuable to end-users [44].
A future investigation will be conducted with an aim to understand the type of information other stakeholders, such as healthcare providers, family members, and professional caregivers need. This study will result in a more comprehensive set of recommendations required to accommodate the design of mobile applications for people aging with MS and other potential end-users. Additional studies will be conducted to explore the needs for the health and wellness self-management among individuals with other chronic conditions and confirm the generalizability of this study findings.
Acknowledgments
This research was supported by a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RE5016-01-00) under the auspices of The Rehabilitation Engineering Research Center on Technologies to Support Successful Aging with Disability (RERC TechSAge). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS).
Contributor Information
Ljilja Ruzic, Email: ljilja@gatech.edu.
Jon A. Sanford, Email: jon.sanford@design.gatech.edu
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