Exposing Benefits and Barriers: mHealth Use in Managing Hemophilia
Despite medical recommendations, many patients do not consistently remain adherent to their prophylactic schedule.
Hemophilia is a genetic bleeding disorder caused by a deficiency or absence of a clotting factor protein. Treatment is often an infusion of the missing clotting protein (factor). Considerable clinical evidence has shown that prophylaxis treatment (replacement of clotting factor) from an early age prevents bleeding, allowing those living with hemophilia to lead a fuller life with minimal restrictions. Yet, despite medical recommendations, many patients do not consistently remain adherent to their prophylactic schedule.
Lack of adherence isn’t limited to maintaining a prophylaxis regimen; it also extends to appropriate treatment recording keeping. As stated in Managing Hemophilia: The Role of Mobile Technology, “Good record keeping is an essential component of home-based hemophilia care. Well-kept treatment diaries can help healthcare professionals to ensure optimal factor use, adherence with treatment regimens, and timely infusion practices.”1
The advent of mobile health (mHealth) apps provides a new alternative to managing bleeding disorders. Individuals can set reminders and track their treatment, record information related to bleeds, generate logs, access additional resources, and locate a hemophilia treatment center (HTC) while traveling. Despite the potential benefits mHealth offers, however, many people have not embraced this new technology.
BioMatrix SpRx, a corporate governance agency for a family of specialty pharmacies, conducted a study investigating the use of hemophilia mobile apps. The purpose of the study was to provide insight into the current use of mHealth by patients with hemophilia to increase awareness of potential benefits and to provide recommendations to increase usage, with the goal of improving health outcomes for people living with bleeding disorders. A cross-sectional survey was conducted with patients with severe hemophilia. This was followed by a systematic evaluation of current hemophilia mobile apps within focus group meetings.
High Access to Mobile Technology and Moderate Experience With mHealth
Most survey respondents had access to mobile technology and were quite familiar with mobile apps. Ninety-three percent used a smartphone and 65% used a tablet or other portable personal computing device with a touchscreen interface; only 5% did not use apps. Furthermore, 90% of respondents used mobile apps daily, with a majority using between 1 and 5 apps per day with social media, photo/video, and music/games/entertainment being the most frequently used app types. A little more than half (56%) had experience with mHealth, but only 14.5% regularly used hemophilia mobile apps.
Narrow Awareness and Limited Use of Hemophilia Mobile Apps
- The majority of survey respondents (68%) were not aware of the scope of hemophilia mobile apps currently available.
- There were widespread opinions regarding the benefits of using hemophilia mHealth; 32% saw no benefit.
- 66% indicated use of an app was never recommended by their doctor or HTC.
- 45% had downloaded a hemophilia mobile app.
From the 45% who downloaded a hemophilia mobile app:
- Approximately one-third discontinued using the app.
- Approximately one-third used the app on a regular basis (a few times a week).
- Approximately one-third were limited users (once a month or only for the alert feature).
Hemophilia Mobile Apps Improve Adherence to Treatment
Fifty-eight percent of individuals reported some degree of nonadherence to treatment, defined as missing a regular, scheduled infusion over a period of 1 month. Within this group, 89% missed between 1 and 3 infusions per month and 11% missed 4 or more per month. Regarding adherence to record keeping, our survey responses were more positive than expected given that research findings indicate “compliance with record keeping is notoriously poor.”2
Survey data within this group revealed:
- 41% do not keep any treatment records
- 11% keep “prophylaxis-only” or “bleed-only” records
- 48% keep a record of both regular prophylaxis treatment and bleeds
Adherence to record keeping was lowest in the age 18-to-24 category and highest among those 60 years and older. Although we were unable to draw statistically significant conclusions from this study regarding the relationship between adherence to a treatment regimen and good record keeping, those who kept some sort of a log seemed less likely to miss scheduled treatments. Additionally, those who used a hemophilia mobile app appeared more likely to remain adherent to treatment. Open-ended responses to survey questions highlighted the value of an “alert feature,” serving as a reminder to infuse and supporting adherence to a treatment regimen.
One parent commented, “When my first son went to college, he did not use a hemophilia mobile app or keep a log. As a result, he experienced many bleeds (including 2 kidney bleeds) due to missing treatment. When my second son went to college, he used a hemophilia mobile app just for the alert feature (he did not log treatments). However, he remained 100% adherent to his treatment and didn’t experience a single bleed during his first year of college.”
Consumers Provide Insight into Valuable Features
Seventy-four percent of survey respondents indicated bar scanning technology to automate the logging of dosage information was the most wished-for feature that would encourage use of a hemophilia mobile app. Other noteworthy desired features included the ability to locate an HTC when traveling (45%), the ability to share information with a personal HTC or doctor (44%), and the ability to use voice command to enter data (42%). Other recommended features included sending alerts for treatment, reordering factor and supplies from a pharmacy, recalling product information, printing graphs from logs, tracking inventory, and customizing and capturing data to accommodate inhibitor patients.
Nonuse and Discontinued Use of a Hemophilia Mobile App
For those who had never downloaded a hemophilia mobile app, the most common reasons included “I don’t keep a log,” “I’m not familiar with hemophilia apps,” “They are too complicated or too much of a hassle to use,” and “I prefer to use paper logs or a spreadsheet.”
A lack of interest in an app and a lack of trust in the protection of personal data were also noted concerns. Common reasons for discontinuing the use of a hemophilia mobile app included failure of an app to allow for multiple patient profiles, accommodate a respondent’s current factor product, meet the needs of patients with inhibitors, provide an easy-to-use interface, and work without malfunction.
Implications to Consider Voice-Activated Technology and Other Devices in Managing Hemophilia
Voice-activated technology. While only 10% of those surveyed reported using voice-activated technology in the home, such as Alexa or Google Home, 55% reported an interest in voice-activated technology. Those who had downloaded a hemophilia mobile app tended to be universally interested in using voice-activated technology, whereas those who had never downloaded an app were equally divided.
Fitness Tracker. Approximately one-third of respondents expressed interest in linking a fitness tracker, such as a Fitbit or Garmin, to a hemophilia mobile app.
Experience With Hemophilia mHealth Influences Perceived Impact
The perceived impact varied based upon previous experience with hemophilia mHealth. The majority of respondents (90%) who had downloaded a hemophilia mobile app (not necessarily current users) believed that use of the app would improve their health care. Opinions were equally divided among those with no previous experience with hemophilia mHealth.
Conclusions From Survey
- Although the sample size was too small to determine a statistically significant relationship, the study findings are consistent with earlier research findings that show that hemophilia mHealth improves adherence to a treatment regimen.
- Access to mobile technology (smartphones and tablets) is high.
- Respondents generally embraced technology and were quite supportive of technological solutions to improve health care.
- Many respondents were receptive to solutions beyond hemophilia mHealth, including the use of voice-activated technology.
- Respondents were generally aware of the benefits of hemophilia mHealth and its likelihood of improving adherence.
- Despite access to technology, a willingness to employ the technology toward managing their health care, and an understanding of the benefits of using hemophilia mHealth to improve adherence, adoption rates of hemophilia mHealth remain quite low.
- Several factors seem to be driving low adoption rates of mHealth: a lack of awareness of hemophilia mHealth options, app complexity, burdensome data entry, concerns with the protection of health information, and inflexible app features (eg, unable to use with an individual’s factor product, cannot be customized to accommodate inhibitor patients, etc).
Focus Group Summary
Several hemophilia mobile apps were reviewed and evaluated by focus groups. These were their conclusions:
- Problems exist in identifying a hemophilia mobile app that best meets consumer needs.
- Many focus group participants expressed little interest in using hemophilia mHealth due to a lack of interest in record keeping and a lack of time.
- Protection of health information within a hemophilia mobile app and the transmission of treatment logs through a nonsecure method were major concerns.
- Although several hemophilia mobile apps required users to create a username and password for exploration, focus group participants favored an app that allowed users to investigate the product without the prerequisite of registering.
- Hemophilia mobile apps that had too many menus or features prevented clear navigation and were perceived as complex and frustrating.
- Opinions varied between digital natives and non-natives regarding hemophilia mobile app layout, graphics, and visual appeal.
- Most focus group participants were frustrated by a hemophilia mobile app’s inability to submit a bleed or infusion record without providing 100% of the requested data.
- The most valued features included treatment alerts and the ability to log an infusion by responding to a hemophilia mobile app alert.
- The evaluation process served as a beneficial educational opportunity for all group participants.
- Many participants who didn’t use a hemophilia mobile app are now using an app to manage their bleeding disorder.
Research studies have concluded there is great potential for mHealth apps to facilitate improved adherence to chronic disease management. Although the obvious feature of treatment reminders through SMS is “most widely, frequently, and successfully used to facilitate adherence to chronic disease management,”3 hemophilia mHealth can potentially improve overall medical adherence by cultivating other motivational factors, including the following:
- improved patient—provider communication and relations
- better monitoring and awareness of bleed warning signs
- increase in adolescent independence
- confidence in managing care
Nonadherence to treatment within the hemophilia community is high and remains a primary concern. Hemophilia mHealth can improve the level of adherence, which can lead to improved health outcomes. The hemophilia community (drug manufacturers, app developers, HTCs, physicians, and consumers) should focus time and resources to develop an action plan to overcome the barriers that have resulted in limited adoption of hemophilia mHealth.
Recommendations to Increase Hemophilia mHealth:
- App developers should address the key barriers to wider implementation and usage.
- mHealth informational resources and databases should be made available to those working in the field of hemophilia to help educate and to highlight the significant benefits that result from using mHealth to manage a bleeding disorder.
- The hemophilia care industry should increase awareness among consumers by providing educational opportunities to highlight these benefits and should make specific hemophilia mHealth recommendations.
- Further assurance that personal health information is protected and that compliance is met according to the standards of the Health Insurance Portability and Accountability Act of 1996 needs to be addressed within the bleeding disorders community.
- Educational materials, such as user guides and comparison charts, need to be made available to aid physicians and patients in the selection of an app that satisfies specific consumer needs.
Recommendations for Future Hemophilia App Development:
- Create a single hemophilia mobile app with the flexibility to handle multiple products.
- Safeguard the security of shared data. Data should be shared only through a secure website. Alternatively, a user should be provided a print option within the app.
- Enable users to determine the data they choose to document when recording a bleed. Include a pop-up reminder to provide users with the option to include additional information at a later date.
- Enable users to investigate the app without having to create an account.
- Include a brief tutorial at the opening of each app for users to freely explore.
- Develop an app with the flexibility to provide multiple interfaces, depending on user needs.
1 Khair, H. (2014, May 6). Managing hemophilia: the role of mobile technology. Dovepress. Retrieved from
2 Arnold, E., Heddle, N., Lane, Sek, J., Almonte, T., and Walker, I. (2005, May 5). Handheld computers and paper diaries for documenting the use of factor concentrates used in haemophilia home therapy: a qualitative study. Haemophilia, 11(3). 216- 226. Retrieved from http://onlinelibrary.wiley.com/wol1/doi/10.1111/j.1365-2516.2005.01095.x/full
3 Hamine, S., Gerth-Guyette, E., Faulx, D., Green, B.B., and Ginsburg, A. S. (2015, Feb. 24). Impact of mHealth Chronic Disease Management on Treatment Adherence and Patient Outcomes: A Systematic Review. Journal of Medical Internet Research, 17 (2). 52. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4376208/
4 Bates, M. (2016, Aug. 17). Best Practices for Consumer Wearables and Wellness Apps and Devices. Future of Privacy Forum. Retrieved from https://fpf.org/2016/08/17/future-privacy-forum-releases-best-practices-consumer-wearables-wellness-apps-devices