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Despite the growing interest and exponential popularity of mobile health (mHealth) apps for long-term conditions such as rheumatic and musculoskeletal diseases (RMDs) and their self-management, patients are rarely directly consulted and involved in the app development process.
This study aims to explore the needs, experiences, and views of people diagnosed with RMDs on mHealth apps.
The study used a mixed methods approach: (1) an initial qualitative phase via a patient focus group in the UK and (2) a survey disseminated through national organizations for patients with RMDs across European countries, the United States, Canada, and Australia.
The focus group included six patients with life-long musculoskeletal conditions. Half had used a self-management app at least once. The use of existing apps was reported as time-consuming due to a lack of functionality. The need for bespoke apps was voiced by all participants. Among 424 patients across European countries, the United States, Canada, and Australia, the main age group was 45 to 54 years (122/424, 28.7%), and 86.8% (368/424) were women. Half of the respondents were aware of the existence of apps to support self-management of their RMDs (188/355, 53%), with 42% (79/188) of them currently using such devices. Patients were mostly interested in an app to self-monitor their health parameters (259/346, 74.9%) and disease activity (221/346, 63.9%) or communicate directly with their health care provider (200/346, 57.8%).
Patients considered that using an app could help them to self-manage their RMD condition if it was tailored to their needs and co-developed with health professionals. The development of such apps will require standardization and regular quality control.
The role of self-management in rheumatic and musculoskeletal diseases (RMDs) has become increasingly recognized, especially in support of holistic and patient-centered care [
Most apps on the market cater to healthy individuals, with a focus on physical activity and diet [
The existence of apps may enable patients who live with long-term physical or mental conditions to improve their self-management. However, the evidence is lacking [
This was a mixed-methods study starting with one patient focus group to gather direct patient insights on the subject. An online, multinational survey followed, informed by the themes emerging from the focus group in the UK.
One audio-recorded patient focus group in the UK was facilitated by an experienced qualitative researcher (HL) in March 2018; a cofacilitator was also present and took notes during the focus group. Patient research partners affiliated with the department of rheumatology at King’s College London were invited by email. After they agreed to participate, an information sheet (developed by AN and EN) was sent to all to explain the purpose of the study.
Broad and open-ended questions were developed for the semistructured focus group guide along with specific questions about the use of mobile health apps for the management of their RMDs (see focus group schedule in
Key themes that emerged from the patient focus group informed the design of the next phase, namely the patient survey to obtain further detailed information on the subject of mHealth apps. The survey was created by a panel of four rheumatologists (AN, EN, LG, FB). A draft survey was shared with five patient research partners who live with RMDs from across five different countries (UK, Slovakia, Germany, the Netherlands, Cyprus) for direct feedback on the structure, relevance, and comprehension of the content, validation with pretest, and appropriate rephrasing when needed before its finalization and dissemination. The results are reported according to the CHERRIES (Checklist for Reporting Results of Internet E-Surveys) checklist [
For dissemination of the survey, the sample frame was defined as people living with RMDs. Individual patient organizations from 45 EU countries, the United States, Canada, and Australia were approached.
For each EU country, dedicated People with Arthritis and Rheumatism (PARE) representatives linked to each European League Against Rheumatism (EULAR) country were contacted directly via email by the study team. Each country representative was responsible for contacting registered patient associations. Patient organizations then disseminated the survey through their websites and social media channels (Twitter). In the countries not linked to EULAR, patient associations or scientific societies were contacted to support the dissemination process.
The survey was translated in Slovakian, Portuguese, Spanish, and French as requested by national patient research partners in charge of dissemination. The survey dissemination was conducted in 2018. Informed consent was collected at the beginning of the survey and was mandatory to start the survey; participants were informed of the expected duration of the survey, purpose, and data storage modalities. The survey contained 41 items on nine pages. It was made available for completion from mid-May to late June through Survey Monkey.
The information provided by participants during the focus group was transcribed verbatim by AN. The data were thematically analyzed manually [
Three of six focus group participants were female, with an age range between 32 and 69 years, and backgrounds of diverse disease duration and level of disability related to their disease (
The analytical framework consisted of five key themes: (1) knowledge and previous use of mHealth apps in general, (2) experience of mHealth apps for self-management in rheumatology, (3) positive and negative features of the apps, (4) need for improvement in self-management apps, and (5) content and functionalities of ideal self-management apps for RMDs.
Three of six patients had heard of the term
I remember when I talked to my consultant, and he let me know that there was an app apparently that you could go into and basically put all your appointments.
I would find this [app] useful if you want to know where to go in the hospital, and it has phone numbers from the departments.
Most patients (4/6) were aware of the actual existence or the current development of apps for patients with RMDs: “My consultant told me about [the developments of apps]” (patient 2, male).
Two of six patients used general health apps (not designed specifically for patients living with RMDs), such as activity trackers or pedometers. Activity trackers and pedometers were defined as devices that use sensors to help users automatically track step counts while aiming for a particular step count or activity goal. Pedometers help promote self-awareness and self-monitoring of activity levels [
Half of the informants (3/6) reported that the pedometers could also be discouraging:
I had the feeling to do thousands of steps, and it [pedometer] was telling me not [participant had the impression of having done a lot of activity; however, the pedometer displayed a low number of counted steps]. It was actually demotivating, and I put it in the bin.
A third of patients had used mHealth apps for their rheumatic disease:
I have used it [app], I felt it was pretty time-consuming as you had to put so much in information) it [app], especially for the blood test.
I am aware of a couple [of apps] through the NRAS [National Rheumatoid Arthritis Society, National Charity UK], the DAS [Disease Activity Score] app ...I also was involved in trying “Rheumopady,” it is an app where you daily mark [input] your fatigue, sleep, pain, and stiffness, and it [app] marks a graph for you.
Most (5/6) expressed enthusiasm about the incorporation of apps for self-management into their daily lives:
That is why I think it is app] very relevant, because I usually write these [symptoms] in a diary, how I feel.
A graph would be great to show trends...a graph is a simple image you could show to the consultant.
I think it [app] would be useful for people who are still working to see...because often they [clinicians, friends, families] don’t realize how much time people have pain, even though they [patients] seem fine all day, they [patients] are probably not well-controlled.
One patient voiced reluctance to use an app due to lack of knowledge about the function and therefore decided not to buy one:
“I was never going to put bloods [tests] into it [app] because, you know, the people who need to know got the info in the medical notes, I don’t look at mine [blood tests] anyway”.
None of the participants were using bespoke RA self-management apps at the time of the interview.
Positive and negative features were discussed by the participants, as well as the pros and cons of using self-management apps. Some participants (2/6) reported that RA self-management apps were helpful in principle, such as to remind them of their disease progress and their symptoms over time (eg, between clinic appointments). The majority (5/6) mentioned that apps could help them to remember and describe their symptoms more accurately to the clinicians as a “symptom diary”:
I think it depends what [the information on the app] is going to be used for, because I think sometimes it would be useful, to put flares in [the app], because it seems so far, we are always fine on the day we go to clinics.
I think it depends on the quantity of information asked [to be included in the app]...it was easy to type from 0-10 [for the VAS] for different health parameters.
However, others (3/6) stated that self-management apps tend to take too much time to enter data every day and were rarely accessible or easy to use:
It’s too much hassle, I mean, it was interesting, but I found it [app] was such a *** some days, it would save the data for you and some days it wouldn’t. It was a trial [used the app during a trial], but if it was in real life I would not have carried on. If you put things [data] in that [app], fine, that’s great, the principle is amazing. I think it is really interesting, you could see the graphs...but the fact is that it [app] did not work as well as it should have...The functionality is a big issue.
It [the process] was so time-consuming...taking five minutes to go online.
That kind of apps frustrate me generally; I don’t find that they [apps] usually work as much as they should.
Participants (2/6) expressed a need for an improvement in the intuitive functionality of apps, especially regarding the time needed for data and information entry into the app.
An app allowing data collection and description of the symptoms would facilitate more relevant outpatient visits as patients tend not to remember how they have been feeling or experiencing symptoms over the past few weeks:
Why I think is very relevant, is because every time I go to see the consultant...and they ask you about not only how you be feeling over the last 7 days, which maybe you could remember...but then you maybe miss the kind of patterns, especially over months...and then that is not always indicative.
It has to be easy too, for the older people, very often you hear this in clinics: “I can’t do that.”
According to most focus group participants (4/6), the key domains to be addressed by an “ideal” app should include the following features: assessment and measurements of fatigue, sleep, pain, mood, activity, symptoms, Disease Activity Score (DAS 28), and appetite. All patients (6/6) suggested that such features in an app could help them in their self-management of their long-term conditions within the context of their daily activities (eg, planning social events, traveling) (
The ability to analyze and draw correlations between symptoms (eg, fatigue, pain, activities), blood tests, medication, and disease activity
The possibility of identifying specific “patterns” of symptom features that could predict flares
Display graphs and trends of the inputted data/info
The ability to quantify and share fatigue levels with the rheumatologist
Information on medication adherence (reminders and other information about the importance of medication adherence)
Blood test and outpatient clinic appointment reminders
Records of blood monitoring results
Availability on a tablet (easier to navigate with a bigger screen, easy use of keyboard with painful fingers due to RMD)
Ease of use (intuitive functionality) especially in the case of “older people”
Therapeutic and management advice, subject to health parameters (eg, high disease activity score=advice to increase steroids or other treatment)
Visual personalized health information through graphs and trends
Information about medication side effects and interactions
Links to websites to explain the purpose of each medication
Links to national organization/helpline (national RMDs Society or Charity)
Explanations and advice about the disease and some aspects of lifestyle changes (eg arthritis and fatigue, arthritis and sex)
Option to set reminders to enter health parameters (eg, fatigue, sleep, pain, mood, activity, symptoms, DAS 28, blood tests)
Notifications/alerts (eg, when new medication supply is needed)
Among the 429 respondents, 394 (91.8%) participants provided complete responses (all mandatory questions completed). The majority (86.9%, 342/394) of respondents were female, and almost half of the participants were 18 to 44 years of age. Sociodemographic information and diagnoses of the participants are detailed in
Country representation varied, with the highest number of responses from Portugal (84/394, 21.3%), followed by Germany (50/394, 15%), Australia (33/394, 8.4%), United States (36/394, 9.1%), and Cyprus (25/394, 6.3%). Other participating countries are shown in
Demographics and disease-related information of participants (N=429).
Demographic | n (%) | |
|
|
|
|
18-24 | 15 (3.8) |
|
25-34 | 50 (12.7) |
|
35-44 | 98 (24.9) |
|
45-54 | 113 (28.7) |
|
55-64 | 87 (22.1) |
|
65 and older | 31 (7.9) |
|
|
|
|
Female | 342 (86.8) |
|
Male | 50 (12.7) |
|
Transgender male | 1 (0.3) |
|
|
|
|
Rheumatoid arthritis | 152 (38.8) |
|
Fibromyalgia | 80 (20.4) |
|
Psoriatic arthritis | 76 (19.4) |
|
Ankylosing spondylitis or spondyloarthritis | 67 (17.1) |
|
Osteoarthritis | 64 (16.3) |
|
Sjögren syndrome | 55 (14.0) |
|
Spine or back disease | 36 (9.2) |
|
Systemic lupus erythematosus | 31 (7.9) |
|
Juvenile idiopathic arthritis | 30 (7.7) |
|
Osteoporosis | 29 (7.4) |
|
Vasculitis | 11 (2.8) |
|
Scleroderma or systemic sclerosis | 14 (3.6) |
|
Polymyositis/dermatomyositis | 4 (1.0) |
|
Other | 65 (16.6) |
aThe participant percentage total is greater than 100% because multiple choices were possible.
Patients were diagnosed mostly with RA (152/394, 38.6%), fibromyalgia (80/394, 20.3%), psoriatic arthritis (76/394, 19.3%), and ankylosing spondylitis (67/394, 17%). Almost half of the patients (191/394, 48.5%) had their main diagnosis for more than 10 years.
Most patients used a mobile phone (355/394, 90.1%), mostly for text messages and calls (341/355, 95.1%) or internet access (328/355, 92.4%) and social media use (eg, Facebook, Twitter, Instagram, Snapchat; 289/355, 81.4%) (
Current and past use of mobile phone apps for rheumatic and musculoskeletal diseases (N=358).
Use of mobile phone appsa | n (%) | |
|
|
|
|
Text messages and calls | 341 (95.3) |
|
Internet access | 328 (91.6) |
|
Games | 115 (32.1) |
|
Social networking sites (eg, Facebook, Twitter, Snapchat, Instagram) | 289 (80.78) |
|
Other apps | 196 (54.7) |
|
|
|
|
Yes | 188 (53.0) |
|
No | 167 (47.0) |
|
|
|
|
Yes | 79 (42.0) |
|
No | 109 (58.0) |
|
|
|
|
On a daily basis | 20 (29.9) |
|
On a weekly basis | 21 (31.3) |
|
On a monthly basis | 8 (11.9) |
|
Less than once monthly | 3 (4.6) |
|
Intermittently | 15 (22.4) |
|
|
|
|
Yes | 44 (41.5) |
|
No | 62 (58.5) |
|
|
|
|
Less than 3 months | 31 (75.6) |
|
3-6 months | 8 (19.5) |
|
More than 6 months | 2 (4.9) |
|
|
|
|
I did not find it/them useful for my condition | 24 (64.9) |
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I feel it did not benefit my overall health | 16 (43.2) |
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I found it/them too time-consuming | 15 (40.5) |
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I got bored | 11 (29.7) |
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I did not like the design or user interface | 10 (27.0) |
aThe n in parentheses represent the total number of participants who answered each question
bTotal is greater than 100% because multiple choices were possible.
The reported app usage was mainly for disease management (42/67, 62.7%) and coping with arthritis-related symptoms and consequences (28/67, 41.8%) (
The patients received recommendations about the apps by patient associations (29/67, 43.3%), advertisements (eg, print media, online social media; 24/67, 35.8%), and friends or relatives (13/67, 19.4%). Apps were recommended by physicians or health care professionals only in a few cases (10/67, 14.9%).
Almost half of the nonusers described a previous trial of a self-management app for less than three months. They mostly stopped using it because they did not find them helpful (24/37, 64.9%), saw no benefit for their health (16/37, 43.2%), found the device too time-consuming (15/37, 40%), got bored of using the app (11/37, 29.7%), or they did not like the design or user interface (10/37, 27%).
For respondents who declared no usage of apps for disease management, the reasons provided were the following: no benefit for their health (33/105, 31.4%), fear they would spend too much time on filling the app (27/105, 25.7%), or concerns about health data protection (25/105, 23.8%) (
The majority of patients were interested in an app that helped with self-monitoring of health parameters (259/346, 74.9%), disease activity (221/346, 63.9%), communication with their health care providers (221/346, 57.8%), and information about their disease (200/346, 53.5%).
Features to be collected by the ideal App (N=345).
Features | n (%) |
|
|
|
|
|
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Sleep | 118 (53.4) |
Disease activity score | 118 (53.4) |
Well-being | 119 (53.8) |
Medication, adherence | 111 (50.2) |
Morning stiffness | 112 (50.7) |
Blood tests | 112 (50.7) |
Nutrition | 106 (47.9) |
Depression/Anxiety | 97 (43.9) |
Infections | 95 (42.9) |
Mood | 86 (38.9) |
Social support | 70 (31.7) |
Fears | 61 (27.6) |
Work | 64 (28.9) |
Otherb | 15 (6.8) |
aTop responses are highlighted in italic.
bOther: Included Flares, Heart Rate, Blood Pressure, Temperature, a place to keep track of how the weather impacts pain level, and X-ray results.
Patients suggested they would like the information collected by the app to be shared with their rheumatologist (277/345, 80.1%), their general practitioner (240/345, 69.4%), and health professionals (eg, physiotherapist, nurse; 254/345, 73.4%). A majority (325/346, 93.9%) stated that they prefer to have control over which health care professionals have access to their personal data through the app because this could make clinic visits more efficient (322/346, 93.1%). Interesting concepts emerged related to either self-management strategies (eg, pain, fatigue, physical activity) or other aspects such as work and social support.
The majority of respondents (197/338, 58.3%) expressed an unwillingness to pay for an app. From those prepared to pay, most (85/141, 60.3%) expressed their preference for a one-off payment (
Patients expressed highest confidence in an app developed by an RMD scientific society (very confident: 207/331, 62.5%). Poorest confidence was expressed for an app developed by a pharmaceutical company (152/331, 45.9%).
Regarding the operating mode of the app, the majority (280/320, 87.5%) were in favor of the app to send reminders, with half of them in favor of receiving reminders for medication intake (149/280, 53.2%) and health appointments (162/280, 57.8%). Most respondents (295/320, 92.2%) were keen to include a display of visual health parameters with images (95/320, 29.7%), tables (71/320, 22.2%), or graphics (129/320, 40.3%).
A majority (306/320, 95.6%) of the respondents wanted to be given the opportunity to rate the app: 18.4% (59/320) wanted to do so by voting, 50.9% (163/320) by using a satisfaction scale, and 22.8% (73/320) by providing free-text comments.
This study assessed patients’ perceptions of and experiences with mHealth apps for self-management in rheumatology. It also explored people’s views on what they perceive as an ideal app. Our study highlights the willingness of people with RMDs to use such apps to improve their disease management. The latter could potentially be through patient empowerment and encouraging patients to take a more active role in decisions relating to their health. Our study also highlights the need for improvement in app functionalities and content, a desire that was consistently expressed across both the patient focus group and the survey.
Despite the recent rapid growth in the development and dissemination of apps for disease self-management, our focus group and survey results demonstrated that half the respondents did not know about the existence of mHealth apps in rheumatology. This might be explained in part by the wide range of ages represented by our survey participants, with 58.7% older than 45 years (231/394). These results are in line with another recent survey on cancer apps, in which the age of the patient (age range 18-39 years) was significantly correlated with the use of the app [
Interestingly, patients who had used available mHealth apps for RMD self-management had an overall negative opinion, and most stopped using them for various reasons (eg, too time-consuming to log in or to complete their health parameters and with no direct positive impact on their health). For example, patients mentioned they were more likely to use an app when they were feeling well and when not undergoing a flare. Moreover, poor functionality of certain apps rendered them unreliable, which caused frustration. These findings are in line with a similar survey conducted in other medical specialties (eg, in type 1 diabetes [
Data sharing with health care providers does raise ethical issues [
Our study specifically raised questions about the content and functionalities of apps that people with RMDs wished to see in an ideal app. A broad range of features was described, such as pain, fatigue, physical activity, sleep, and morning stiffness. However, many of these details were not yet included or only partially included in existing apps currently available on the market [
Therefore, our results are important to provide further guidance on how best to tailor newly developed apps to patient needs in the field of RMDs.
Our study provides an in-depth approach to studying views, needs, preferences, and previous experiences of mHealth apps in patients living with RMDs. Using a mixed-methods approach enabled the research team to identify key aspects of mHealth app features and functionalities that have the potential to positively influence future development of apps. Moreover, many of the emerging themes were in line with the five core self-management skills (pain education, self-efficacy building, self-monitoring, social support, and goal setting) [
Our online, multinational survey, translated into five different languages, made it possible to reach out to the wider patient community with RMDs and to obtain first-hand patient feedback. The survey was disseminated and completed by participants with a broad range of age categories, diseases, and countries across three different continents. Limitations of our study include the single focus group performed in one country. In addition, because of the qualitative arm of the study results and that the online survey was open to everyone, the results might not necessarily be generalizable. Furthermore, most of the participants in the focus group had a diagnosis of RA, which may affect the generalizability of the results to other RMDs.
However, our survey provided greater granularity of information on specific themes that emerged from the focus group, as well as more generic themes confirmed in the systematic review of the literature and expert opinion. The higher number of female patients participating in the survey is in line with existing epidemiological data, which supports that the gender ratio is in favor of women in highly prevalent RMDs, such as fibromyalgia and RA [
In conclusion, despite the reluctance of some people with RMDs to incorporate apps for reasons such as relevance of content, reliable functionality, and data safety concerns, there was acknowledgment that apps may be suitable for patient self-management. If apps are bespoke and developed in close collaboration with the key stakeholders (ie, the patients and carers), this inclusive approach may have potential benefits for patient health. The development of such apps will require standardization and quality control processes to be in place [
Patient characteristics.
Demographic data: country of origin of the survey participants.
Reasons for app use reported by participants.
Reasons for not using apps for RMDs.
Purposes of the ideal app.
Patients willingness to pay for the app.
Disease Activity Score
European League Against Rheumatism
rheumatoid arthritis
rheumatic and musculoskeletal diseases
We wish to thank the patient research partners who helped in the survey development, all the PARE liaisons who helped in the survey dissemination, all the patient research partners that contributed to the survey dissemination outside the EULAR countries, all the patients who participated in the focus group and survey, and the native speakers who checked and modified the survey (Javier Carrio, Goncalo Boleto, Petra Balážová). The project was funded by EULAR (project number CLI102).
AN designed the survey, analyzed the qualitative and quantitative data, and wrote the first draft of the manuscript. HL carried out the focus group, helped with the conduct of the study, assisted with the qualitative data analysis, and edited the manuscript. LG and FB designed the survey, participated in the quantitative data analysis, and edited the manuscript. EN designed the survey, helped with the execution of the qualitative and quantitative studies and data analysis, and edited the manuscript.
None declared.