540906 research-article2014
JHI0010.1177/1460458214540906Health Informatics JournalPandher and Bhullar
Article
Smartphone applications for seizure management
Health Informatics Journal 2016, Vol. 22(2) 209–220 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1460458214540906 jhi.sagepub.com
Puneet Singh Pandher Northern Health, Australia
Karamdeep Kaur Bhullar Goulburn Valley Health, Australia
Abstract Technological advancements continue to provide innovative ways of enhancing patient care in medicine. In particular, the growing popularity of smartphone technology has seen the recent emergence of a myriad of healthcare applications (or apps) that promise to help shape the way in which health information is delivered to people worldwide. While limited research already exists on a range of such apps, our study is the first to examine the salient features of smartphone applications as they apply to the area of seizure management. For the purposes of this review, we conducted a search of the official online application stores of the five major smartphone platforms: iPhone, Android, Blackberry, Windows Mobile and Nokia-Symbian. Apps were included if they reported to contain some information or tools relating to seizure management and excluded if they were aimed exclusively at health professionals. A total of 28 applications met these criteria. Overall, we found an increasing number of epilepsy apps available on the smartphone market, but with only a minority offering comprehensive educational information alongside tools such as seizure diaries, medication tracking and/or video recording.
Keywords assistive technologies, ehealth, information technology healthcare evaluation, mobile health, telecare
Introduction Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures.1 It affects around 50 million people worldwide and is a significant contributor to global disease burden.2 For individuals, living with epilepsy can pose many challenges. Besides the direct impact of seizures on their physical well-being, people with epilepsy face issues ranging from disruption to work and education, restrictions on activities such as driving, psychological stress and social Corresponding author: Puneet Singh Pandher, The Northern Hospital, Northern Health, 185 Cooper St, Epping, Melbourne, VIC 3076, Australia. Email: [email protected]
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stigma.3 To help combat this, there has been an increasing recognition in clinical guidelines of the importance of epilepsy self-management programmes in improving treatment adherence, controlling seizures and reducing the negative impacts of epilepsy on patients.4,5 The recent report by the Institute of Medicine highlighted the need for the development and expansion of epilepsy selfmanagement programmes so that they take better advantage of opportunities offered by technologies such as computers and mobile devices.6 By doing so, it is hoped that patients are able to feel in greater control of their therapy and enjoy improved quality of life. One such technology to recently emerge has been the smartphone. Smartphones are mobile devices that combine the features of traditional mobile phones with computer capabilities. Their use has been growing steadily since their first appearance on the market, with the latest figures estimating just over 1.2 billion users worldwide7 and smartphones outselling feature mobile handsets for the first time ever in 2013.8 Indeed, with the average price of smartphones projected to continue to fall, access to such devices is set to become commonplace even in lower socioeconomic settings, with developing regions – in particular, the Asia/Pacific – predicted to become the major source of future market growth.9 One of the major advantages of smartphone technology is its ability to run downloadable computer programs called applications (or apps). In terms of medical usage, healthcare apps have shown potential in a range of areas ranging from the provision of instant access to medical references and journals to inbuilt tools such as monitors, personal diaries and calculators. Currently, it is estimated that there are over 31,000 health and fitness apps available in online app stores, and this number is only expected to rise in the future.10 However, as these technologies become more accessible to patients, a corresponding need also arises for the medical community to familiarise itself with them. This is especially important as there are currently no regulatory requirements in place for the development and marketing of the majority of healthcare applications,11 and there is limited evidence to support the accuracy of anonymous user ratings in the setting of health-care apps. To help address this gap in knowledge, several studies have examined the content of apps in areas ranging from weight loss12 and smoking cessation,13 to diabetes and asthma self-management.14,15 However, no similar studies exist in the field of epilepsy. We set out to examine, for the first time, the characteristics of smartphone applications for epilepsy and seizure management.
Methods Selection criteria The search for applications was conducted between April and May 2013 on the official online app stores of the five major smartphone platforms: iPhone (App Store), Android (Google Play), Blackberry (App World), Windows Phone (Windows Store) and Nokia-Symbian (Ovi). The search queries of ‘epilepsy’ and ‘seizure’ were used. Included apps were written in English and claimed to contain some information and/or tools relating to epilepsy or seizure management. Apps were excluded if they were aimed solely at health-care professionals.
Data coding, extraction and analysis All relevant apps identified were installed onto a compatible device for analysis and singularly coded by the primary author. Information on app price, file size, release date and user ratings were directly sourced from the individual app stores. However, as none of the smartphone retailers publish download statistics, these were obtained separately through an independent analysis firm.16
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Pandher and Bhullar Table 1. Features of seizure management applications. Seizure management feature Patient education General informationa Lifestyle factors/triggersb First aid/safetyc Medication/treatmentd Healthcare partnershipe Self-monitoring Seizure diary Medication tracking Video recording
Number of apps (%) 13 (46%) 8 (29%) 11 (39%) 9 (32%) 2 (7%) 18 (64%) 11 (39%) 5 (18%)
This list is not exhaustive of all the features tested in each category of patient education. aDefinitions, pathophysiology, symptoms, epidemiology and prognosis. bAlcohol, sleep deprivation, medication non-adherence, driving regulations, employment and education. cSeizure first aid, injury prevention, swimming and other high risk sports. dMedication types, side effects and other treatment options. eEncourages regular review.
Data collected was stored in a Microsoft Excel 2010 spreadsheet and statistical significance tested using analysis of variance. All apps were accessed from Australia.
Assessment criteria Each app was examined for the presence of eight pre-defined criteria that formed the core component of the content analysis (see Table 1). These were adapted independently from the Institute of Medicine report – ‘Epilepsy across the Spectrum: Promoting Health and Understanding’.6
Results Smartphone platform Following the online search of application stores, 28 apps17–44 were found that met the selection criteria. The majority of these apps were available via the iPhone17–32 (n = 16; 57%) or Android33–43 (n = 11; 39%) operating systems with an additional app being found on Blackberry.44 There were no relevant apps identified in the Windows or Nokia-Symbian stores. Four sets of apps were present on multiple platforms; three of these were available on the iPhone17,18,29 and Android33,34,41 app stores with the other available on Android43 and Blackberry.44
Cost and file size The price of the apps varied. The majority of the apps were free17–23,28,30,31,33–37,39,40,42–44 (n = 20; 71%). Three apps cost AUD0.9924,29,32 with the remaining five ranging between AUD1.29 and AUD5.49.25–27,38,41 The mean price was AUD0.64, and there was no significant difference in app cost between the various smartphone platforms (p = 0.51). Interestingly, the top five apps which scored the highest in both the content analysis and user ratings were all available for free. The file size of the apps ranged from just 233 kb to 66.4 mb with a median of 2.3 mb.
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30
Number of apps
25
20
15
10
5
0 Dec-08 Jul-09
Jan-10 Aug-10 Feb-11 Sep-11 Apr-12 Oct-12 May-13 Nov-13
Figure 1. Number of available seizure management applications over time.
Release date The release date of the reviewed apps ranged from June 2009 to May 2013. The first app to be released was Seizure Disorder Coach on the iPhone,32 and the most recent one being Your Epilepsy Diary on Android.36 Since their first appearance on the market, the list of epilepsy apps has been rising rapidly, with nearly two-thirds of apps becoming available since 2012 (see Figure 1).
User ratings Application user ratings were obtained directly from the online app stores of the various smartphone platforms and were only included if the application had a minimum of five user reviews. Ratings were calculated in 0.5 increments ranging from zero to five. The majority of apps had no or fewer than five user reviews (n = 16; 57%) and were thus excluded from this analysis. Out of the remaining 12 apps, the best rated were E-Action Info (iPhone),19 Seizure Log (iPhone),23 Epilepsy Society (Android)35 and Young Epilepsy (Android).33 A full distribution of user ratings can be seen in Figure 2.
Download frequency Download figure estimates were obtained independently from xyo.net.16 The most downloaded app was My eDiary Australia (iPhone)30 with an estimated 39,000 downloads. During the time of review, only four apps had been downloaded more than 10,000 times23,30,31,43, and the vast majority of apps had less than or equal to 1000 estimated downloads. The general trend observed was that the apps which had been on the market for longer had higher estimated download figures.
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18 16
Number of apps
14 12 10 8 6 4 2 0
Nil
0-1
1.5 - 2
2.5 - 3
3.5 - 4
4.5 - 5
Figure 2. Distribution of application user ratings.
App development Health-care professional involvement, either directly as the app creator or indirectly as a source of information for app development or evaluation, was reported in 43 per cent of all reviewed apps (n = 12). In all, 10 of these apps were developed in conjunction with recognised epilepsy not-forprofit organisations such as the Epilepsy Society UK, British Epilepsy Association, Young Epilepsy and Epilepsy Action Australia,17,18,22,30,31,33–35,43,44 while a further two reported direct medical input from individual medical professionals.20,21
Content analysis A full list of the applications and how they ranked in the assessment criteria can be seen in Table 2. App content was divided broadly into either (1) education material or (2) tools to assist in seizure management. Out of the 28 reviewed applications, 8 featured primarily patient education material.19,25,29,32,37,38,40,41 A total of 10 contained only seizure management tools21,23,26–28,30,36,39,43,44 and 8 had a combination of both.17,18,20,22,31,33–35 In addition, two apps scored zero from the pre-defined criteria.24,42 Both of these claimed to be able to detect when the smartphone user may be experiencing a seizure and automatically alert specified contacts via an email or text-message- functions that were not tested as part of this study.
Apps providing health information Epilepsy education was conveyed primarily in the form of written content with only a handful of apps utilising illustrations, diagrams or video animations to present health information. Out of the five categories, it was found that general information on epilepsy and seizures was the most thoroughly covered with nearly half of all applications (n = 13; 46%) addressing this aspect of patient education. This was closely followed by education material on seizure first aid and safety (n = 11; 39%), general advice on living with epilepsy and potential seizure triggers (n = 9; 32%), and
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Table 2. Overview of seizure management applications, rank-ordered by content analysis score. App name
Platform
Cost (AUD) Patient Self-monitoring Overall score education (0–5) (0–3) (0–8)
Epi & Me20 Epilepsy Action18,34 Young Epilepsy17,33 Epilepsy Society35 Epilepsy Toolkit22 E-action Info19 Epilepsy Guide31 Epilepsia App21 Epilepsy App39 Epilepsy Vault40 Living With Epilepsy29,41 My eDiary Australia30 My Epilepsy Diary43,44
iPhone Android/iPhone Android/iPhone Android iPhone iPhone iPhone iPhone Android Android Android/iPhone iPhone Android/ Blackberry iPhone Android iPhone Android iPhone Android
Free Free Free Free Free Free Free Free Free Free 1.29/0.99 Free Free
4 4 4 3 3 4 3 0 0 2 2 0 0
3 2 2 2 2 0 1 3 2 0 0 2 2
7 6 6 5 5 4 4 3 2 2 2 2 2
Free Free 4.49 2.49 5.49 Free
0 0 1 1 0 1
2 2 0 0 1 0
2 2 1 1 1 1
iPhone
0.99
1
0
1
iPhone
Free
0
1
1
iPhone Android iPhone
1.99 Free 0.99
0 0 0
1 0 0
1 0 0
Seizure Log23 Your Epilepsy Diary36 Epilepsy Animations25 Epilepsy App Alert38 Seizures27 Seizure Alert and Recorder37 Seizure Disorder Coach32 Seizure Journal For Parents28 VNS Timer26 EpDetect42 fTEL24
information on anti-epileptic drug treatment (n = 9; 32%). The least well-covered topic area was advocating an active partnership with the healthcare team with only two apps clearly conveying this message.19,20 The comprehensiveness of information covered between the different apps varied, and certain apps were easier to navigate compared to others.
Apps providing seizure management tools Seizure diaries. A total of 18 apps17,18,20–23,26–28,30,31,33–36,39,43,44 (64%) offered functions for patients to track their seizures, making it the most commonly featured self-management component. Seizure diaries varied in the exact amount of information recorded, but all contained an option to enter a seizure event along with the date, time and duration of seizure. The majority of apps also allowed users to specify the seizure type as well as enter any triggers that might have precipitated the seizure (e.g. missed medication, lack of sleep or alcohol intake). Other features present included the ability to graph log entries over time so as to allow better visualisation of seizure control.
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Medication tracking. In all, 11 apps18,20–22,30,34–36,39,43,44 (39%) had features allowing patients to keep a track of their medication intake. Most of these apps allowed users to manually enter the medications they were taking along with the dosages and administration times. In addition, the majority also allowed users to set alarm reminders that would alert them at the specified times to take their medications on time. Video recording. Five apps17,20,21,23,33 (18%) featured video-recording capabilities that enabled users to capture real-time footage of seizure events. By selecting one of the menu options on the main interface, users were able to directly access the smartphone camera to record seizures. Depending on the application, the video would then either be stored in an inbuilt video library or incorporated as part of an event log in the seizure diary for access at a later date. All recordings could also be transferred onto other multimedia devices if required.
Discussion Smartphone platform and app growth The majority of apps were available on the iPhone or Android operating systems, with only one app being found on Blackberry, and none on Windows Mobile and Nokia-Symbian. This is not surprising considering that iPhone and Android currently hold the majority of smartphone market shares, accounting for 92.3 per cent of all smartphone shipments in the first quarter of 2013.45 It is also worth noting that while the number of epilepsy apps has grown steadily since their first appearance on the market, the total number is still considerably less than some of the other health and fitness apps available on this platform.46 However, with the continued rise in smartphone ownership, and the increasing recognition of smartphones as an innovative way of delivering healthcare to patients, we expect this number to continue to rise rapidly in the future.
Application content Although the quality of content among the applications varied, overall our findings supported previous research demonstrating an increasing number of health-care apps becoming available on the smartphone market but without the comprehensiveness of content and functionality that may be expected from such technology. We found epilepsy education to be poorly covered among the majority of applications. The information presented was often incomplete and did not address the breadth of topics recommended for people living with epilepsy. Topics areas such as epilepsy treatment, triggers and lifestyle factors were covered by less than one-third of all apps and only two apps directly advocated the benefits of an ongoing relationship with the healthcare team – something widely recognised as being an essential part of developing an effective, ongoing care plan.4 This, however, was not entirely unexpected. Abroms et al.,13 in one of the first studies to examine the content of smartphone health-care applications, demonstrated that the majority of iPhone apps for smoking cessation had low levels of adherence to clinical guidelines. Similar findings were also observed in apps for asthma self-management15 as well as those promoting strategies to assist in weight loss12 and abstinence from alcohol.47 On the other hand, it was perhaps not surprising that the seizure diary was the most utilised tool among the reviewed applications. Keeping seizure diaries has long been recommended as a useful intervention for epilepsy patients,48 and electronic diaries in particular serve to highlight some of the unique advantages of smartphone technology over more traditional methods of epilepsy management. These include but are not limited to improved accessibility and storage, remote
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data-sharing capabilities and the ability to generate automated graphs for better appraisal of seizure control.49 In contrast, other seizure management tools such as medication tracking and video recording were less well utilised. This was disappointing considering that virtually all smartphone devices have inbuilt video recording and reminder setting capabilities, and it would not have required a considerable effort to incorporate such features within the reviewed apps.
App development The current lack of regulation over the production or manufacture of health-care applications poses a problem for users when choosing a particular app and for health-care professionals when recommending one. Although regulatory bodies such as the US Food and Drug Administration agency (FDA), United Kingdom’s Medicine and Healthcare Products Regulatory Agency (MHPR) and the Australian Therapeutic Goods Administration (TGA), have made positive steps towards producing guidelines to better regulate medical applications, these do not currently extend to the majority of health-care apps on the smartphone market, including those reviewed in this study.11,50,51 As the reliability of content cannot be assumed, it becomes especially important for the declaration of any medical input in app development. In terms of epilepsy management, we found that 10 apps reported being developed in partnership with recognised health organisations, while a further two claimed direct input from individual doctors. The majority, however (n = 16; 57%), gave no source for their information. These findings were similar to those observed in smartphone applications for pain management,52 and highlight the significant gap still present in ensuring health-care apps available to consumers contain relevant and accurate information.
Top applications There were a limited number of applications which combined comprehensive, evidence-based information with reliable and supportive tools. The five highest scoring applications were Epi & Me,20 Young Epilepsy,17,33 Epilepsy Action,18,34 Epilepsy Toolkit22 and Epilepsy Society.35 All of these apps featured components of both epilepsy education alongside one or more of the seizure management tools listed above. In addition, of particular note was that all of the best scoring applications reported health-care professional input at some level in their development and all were available for free. This lends further support to the notion of health-care apps requiring additional regulation, as well as suggesting that the best applications are not necessarily the ones that consumers pay more money for. Screenshots of two of these apps can be seen in Figures 3 and 4.
Study limitations This study did have some limitations. First, as there are no current guidelines in place relating to the development of health-care apps, including in the area of epilepsy management, the assessment criteria for the content analysis were adapted independently through a report by the Institute of Medicine.6 Although these may not be specific to smartphone applications, we felt the proposed criteria could be reasonably expected to be present on this platform. In addition, we also verified the presence of similar recommendations in clinical guidelines published by other bodies such as the National Institute for Health and Clinical Excellence.4 Second, while the assessment criteria provided an indication of the quality of content within an app, the apps were not analysed for their usability with consumers. Thus, even though some apps may have ranked highly in our content analysis, they may not necessarily have been the most functional or easy to use. As such, given that overall app usage is likely to be impacted upon by a combination of the above two factors, we
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Figure 3. Main menu of Epilepsy Society35 (Android).
Figure 4. Example of a seizure log from Epi & Me20 (iPhone).
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believe this is a potential area for future research and something which would be best tested by recruiting epilepsy patients to test such apps in a real-life setting. Third, as none of the app stores provided any objective information on users, we could not comment on the demographics of users likely to use a particular app. Finally, not all claims made within the apps were analysed for accuracy, and although both authors worked in collaboration to identify the criteria for the content analysis, only the primary author coded each individual application.
Conclusion Emerging mobile health technologies like the smartphone have the potential to change the dynamics of epilepsy self-management and monitoring. Besides convenient access to relevant educational content, smartphone apps can offer additional functions ranging from inbuilt electronic diaries and medication reminders to seizure recording and data-sharing capabilities. The results of our review highlight a growing number of seizure management applications becoming accessible to individuals with epilepsy. Although the majority of reviewed apps were inexpensive, only a limited number combined comprehensive, evidence-based information with unique functionality and tools. There is scope for further evaluation of the currently available smartphone applications in terms of their overall usability, as well as a need to better regulate such apps to ensure improved compliance with established clinical guidelines. In turn, this will enable us to fully exploit the many potential benefits of smartphone technology in the area of epilepsy management and provide greater confidence to clinicians suggesting such apps to their patients. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
References 1. Fisher RS, Boas WvE, Blume W, et al. Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia 2005; 46: 470–472. 2. World Health Organization. Epilepsy factsheet, http://www.who.int/mediacentre/factsheets/fs999/en/ index.html (accessed 4 August 2013). 3. Joint Epilepsy Council of Australia. A fair go for people living with epilepsy in Australia, http://www. epinet.org.au/downloads/File/APPENDIX%20A_%20A%20Fair%20Go%20Report.pdf (accessed 1 August 2013). 4. NCGC. The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care, http://www.nice.org.uk/nicemedia/live/13635/57784/57784.pdf (2012). 5. CDC. Living well with epilepsy II, http://www.cdc.gov/epilepsy/pdfs/living_well_2003.pdf (2003). 6. England MJ, Liverman C, Schultz AM, et al. Epilepsy across the spectrum: promoting health and understanding. Washington, DC: National Academies Press, 2012. 7. Gilstrap D. Ericsson mobility report, http://www.ericsson.com/res/docs/2013/ericsson-mobility-reportjune-2013.pdf (2013). 8. Gartner. Gartner says annual smartphone sales surpassed sales of feature phones for the first time in 2013, http://www.gartner.com/newsroom/id/2665715 (accessed 25 April 2014).
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9. mobiThinking. Global mobile statistics 2014 part A: mobile subscribers; handset market share, mobile operators, http://mobithinking.com/mobile-marketing-tools/latest-mobile-stats/a#smartphoneforecast (accessed 25 April 2014). 10. Healthcare Global. Use of mobile health care apps on the rise, http://www.healthcareglobal.com/healthcare_technology/use-of-mobile-health-care-apps-on-the-rise (accessed 1 August 2013). 11. FDA. Mobile medical applications: guidance for industry and Food and Drug Administration staff, http://www.fda.gov/downloads/MedicalDevices/DeviceRegulationandGuidance/GuidanceDocuments/ UCM263366.pdf (2013). 12. Breton E, Fuemmeler B and Abroms L. Weight loss – there is an app for that! But does it adhere to evidence-informed practices? Behav Med Pract Policy Res 2011; 1: 523–529. 13. Abroms LC, Padmanabhan N, Thaweethai L, et al. iPhone apps for smoking cessation: a content analysis. Am J Prev Med 2011; 40: 279–285. 14. Chomutare T, Fernandez-Luque L, Arsand E, et al. Features of mobile diabetes applications: review of the literature and analysis of current applications compared against evidence-based guidelines. J Med Internet Res 2011; 13: e65. 15. Huckvale K, Car M, Morrison C, et al. Apps for asthma self-management: a systematic assessment of content and tools. BMC Med 2012; 10: 144. 16. Xyologic Mobile Analysis. http://www.xyo.net (accessed 1 August 2013). 17. We Are Float Ltd. Young Epilepsy. iPhone, 2012, 1.3.1 edition. 18. British Epilepsy Association. Epilepsy Action. iPhone, 2013, 1.0.1 edition. 19. UCB Pharma SA. E-action Info. iPhone, 2013, 1.0.2 edition. 20. Huberfeld G. Epi & Me. iPhone, 2013, 1.0.1 edition. 21. SODA. Epilepsia App. iPhone, 2013, 1.0.2 edition. 22. MCM Net Limited. Epilepsy Toolkit. iPhone, 2012, 1.0.1 edition. 23. Seizure Tracker LLC. Seizure Log. iPhone, 2010, 1.6 edition. 24. Yamagishi E. fTEL. iPhone, 2013, 1.2 edition. 25. XL Sistemas SA. Epilepsy Animations. iPhone, 2012, 1.0 edition. 26. Feather S. VNS Timer. iPhone, 2012, 1.03 edition. 27. Ulupov D. Seizures. iPhone, 2012, 1.0 edition. 28. CloudMed LLC. Seizure Journal for Parents. iPhone, 2011, 1.01 edition. 29. Thu NM. Living with Epilepsy. iPhone, 2010, 1.0 edition. 30. Irody, Inc. My eDiary Australia. iPhone, 2010, 3.3 edition. 31. MCM Net Limited. Epilepsy Guide. iPhone, 2010, 1.6 edition. 32. Think Safe, Inc. Seizure Disorder Coach. iPhone, 2009, 1.2 edition. 33. We Are Float Ltd. Young Epilepsy. Android, 2012, 1.3.1 edition. 34. Epilepsy Action. Epilepsy Action. Android, 2013, 1.2 edition. 35. Epilepsy Society. Epilepsy Society. Android, 2011, 2.0 edition. 36. Benderunit9000. Your Epilepsy Diary. Android, 2013, 1.1 edition. 37. Shilene. Seizure Alert and Recorder. Android, 2012, 1.0 edition. 38. Green Unlimited. Epilepsy App Alert. Android, 2012, 1.0 edition. 39. Adiljan. Epilepsy App. Android, 2012, 2.0.2 edition. 40. Leung E. Epilepsy Vault. Android, 2012, 1.0 edition. 41. Koolappz. Living with Epilepsy. Android, 2011, 1.0 edition. 42. Dlugosz R. EpDetect. Android, 2011, 1.0 edition. 43. Irody Inc. My Epilepsy Diary. Android, 2010, 3.1 edition. 44. Irody Inc. My Epilepsy Diary. Blackberry, 2012, 2.9.5 edition. 45. International Data Corporation. Android and iOS combine for 92.3% of all smartphone operating system shipments in the first quarter while Windows phone leapfrogs BlackBerry, according to IDC, http:// www.idc.com/getdoc.jsp?containerId=prUS24108913 (accessed 4 August 2013). 46. West HJ, Hall CP, Hanson LC, et al. There’s an app for that: content analysis of paid health and fitness apps. J Med Internet Res 2012; 14: e72.
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47. Cohn AM, Hunter-Reel D, Hagman BT, et al. Promoting behavior change from alcohol use through mobile technology: the future of ecological momentary assessment. Alcohol Clin Exp Res 2011; 35: 2209–2215. 48. Neugebauer R. Reliability of seizure diaries in adult epileptic patients. Neuroepidemiology 1989; 8: 228–233. 49. Fisher RS, Blum DE, DiVentura B, et al. Seizure diaries for clinical research and practice: limitations and future prospects. Epilepsy Behav 2012; 24: 304–310. 50. TGA. Regulation of medical software and mobile medical ‘apps’, http://www.tga.gov.au/industry/ devices-software-mobile-apps.htm (accessed 25 April 2014). 51. Guidance on medical device stand-alone software (including apps), http://www.mhra.gov.uk/ Howweregulate/Devices/Software/index.htm (accessed 25 April 2014). 52. Rosser BA and Eccleston C. Smartphone applications for pain management. J Telemed Telecare 2011; 17: 308–312.
JHI0010.1177/1460458214540906Health Informatics JournalPandher and Bhullar
Article
Smartphone applications for seizure management
Health Informatics Journal 2016, Vol. 22(2) 209–220 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1460458214540906 jhi.sagepub.com
Puneet Singh Pandher Northern Health, Australia
Karamdeep Kaur Bhullar Goulburn Valley Health, Australia
Abstract Technological advancements continue to provide innovative ways of enhancing patient care in medicine. In particular, the growing popularity of smartphone technology has seen the recent emergence of a myriad of healthcare applications (or apps) that promise to help shape the way in which health information is delivered to people worldwide. While limited research already exists on a range of such apps, our study is the first to examine the salient features of smartphone applications as they apply to the area of seizure management. For the purposes of this review, we conducted a search of the official online application stores of the five major smartphone platforms: iPhone, Android, Blackberry, Windows Mobile and Nokia-Symbian. Apps were included if they reported to contain some information or tools relating to seizure management and excluded if they were aimed exclusively at health professionals. A total of 28 applications met these criteria. Overall, we found an increasing number of epilepsy apps available on the smartphone market, but with only a minority offering comprehensive educational information alongside tools such as seizure diaries, medication tracking and/or video recording.
Keywords assistive technologies, ehealth, information technology healthcare evaluation, mobile health, telecare
Introduction Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures.1 It affects around 50 million people worldwide and is a significant contributor to global disease burden.2 For individuals, living with epilepsy can pose many challenges. Besides the direct impact of seizures on their physical well-being, people with epilepsy face issues ranging from disruption to work and education, restrictions on activities such as driving, psychological stress and social Corresponding author: Puneet Singh Pandher, The Northern Hospital, Northern Health, 185 Cooper St, Epping, Melbourne, VIC 3076, Australia. Email: [email protected]
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stigma.3 To help combat this, there has been an increasing recognition in clinical guidelines of the importance of epilepsy self-management programmes in improving treatment adherence, controlling seizures and reducing the negative impacts of epilepsy on patients.4,5 The recent report by the Institute of Medicine highlighted the need for the development and expansion of epilepsy selfmanagement programmes so that they take better advantage of opportunities offered by technologies such as computers and mobile devices.6 By doing so, it is hoped that patients are able to feel in greater control of their therapy and enjoy improved quality of life. One such technology to recently emerge has been the smartphone. Smartphones are mobile devices that combine the features of traditional mobile phones with computer capabilities. Their use has been growing steadily since their first appearance on the market, with the latest figures estimating just over 1.2 billion users worldwide7 and smartphones outselling feature mobile handsets for the first time ever in 2013.8 Indeed, with the average price of smartphones projected to continue to fall, access to such devices is set to become commonplace even in lower socioeconomic settings, with developing regions – in particular, the Asia/Pacific – predicted to become the major source of future market growth.9 One of the major advantages of smartphone technology is its ability to run downloadable computer programs called applications (or apps). In terms of medical usage, healthcare apps have shown potential in a range of areas ranging from the provision of instant access to medical references and journals to inbuilt tools such as monitors, personal diaries and calculators. Currently, it is estimated that there are over 31,000 health and fitness apps available in online app stores, and this number is only expected to rise in the future.10 However, as these technologies become more accessible to patients, a corresponding need also arises for the medical community to familiarise itself with them. This is especially important as there are currently no regulatory requirements in place for the development and marketing of the majority of healthcare applications,11 and there is limited evidence to support the accuracy of anonymous user ratings in the setting of health-care apps. To help address this gap in knowledge, several studies have examined the content of apps in areas ranging from weight loss12 and smoking cessation,13 to diabetes and asthma self-management.14,15 However, no similar studies exist in the field of epilepsy. We set out to examine, for the first time, the characteristics of smartphone applications for epilepsy and seizure management.
Methods Selection criteria The search for applications was conducted between April and May 2013 on the official online app stores of the five major smartphone platforms: iPhone (App Store), Android (Google Play), Blackberry (App World), Windows Phone (Windows Store) and Nokia-Symbian (Ovi). The search queries of ‘epilepsy’ and ‘seizure’ were used. Included apps were written in English and claimed to contain some information and/or tools relating to epilepsy or seizure management. Apps were excluded if they were aimed solely at health-care professionals.
Data coding, extraction and analysis All relevant apps identified were installed onto a compatible device for analysis and singularly coded by the primary author. Information on app price, file size, release date and user ratings were directly sourced from the individual app stores. However, as none of the smartphone retailers publish download statistics, these were obtained separately through an independent analysis firm.16
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Pandher and Bhullar Table 1. Features of seizure management applications. Seizure management feature Patient education General informationa Lifestyle factors/triggersb First aid/safetyc Medication/treatmentd Healthcare partnershipe Self-monitoring Seizure diary Medication tracking Video recording
Number of apps (%) 13 (46%) 8 (29%) 11 (39%) 9 (32%) 2 (7%) 18 (64%) 11 (39%) 5 (18%)
This list is not exhaustive of all the features tested in each category of patient education. aDefinitions, pathophysiology, symptoms, epidemiology and prognosis. bAlcohol, sleep deprivation, medication non-adherence, driving regulations, employment and education. cSeizure first aid, injury prevention, swimming and other high risk sports. dMedication types, side effects and other treatment options. eEncourages regular review.
Data collected was stored in a Microsoft Excel 2010 spreadsheet and statistical significance tested using analysis of variance. All apps were accessed from Australia.
Assessment criteria Each app was examined for the presence of eight pre-defined criteria that formed the core component of the content analysis (see Table 1). These were adapted independently from the Institute of Medicine report – ‘Epilepsy across the Spectrum: Promoting Health and Understanding’.6
Results Smartphone platform Following the online search of application stores, 28 apps17–44 were found that met the selection criteria. The majority of these apps were available via the iPhone17–32 (n = 16; 57%) or Android33–43 (n = 11; 39%) operating systems with an additional app being found on Blackberry.44 There were no relevant apps identified in the Windows or Nokia-Symbian stores. Four sets of apps were present on multiple platforms; three of these were available on the iPhone17,18,29 and Android33,34,41 app stores with the other available on Android43 and Blackberry.44
Cost and file size The price of the apps varied. The majority of the apps were free17–23,28,30,31,33–37,39,40,42–44 (n = 20; 71%). Three apps cost AUD0.9924,29,32 with the remaining five ranging between AUD1.29 and AUD5.49.25–27,38,41 The mean price was AUD0.64, and there was no significant difference in app cost between the various smartphone platforms (p = 0.51). Interestingly, the top five apps which scored the highest in both the content analysis and user ratings were all available for free. The file size of the apps ranged from just 233 kb to 66.4 mb with a median of 2.3 mb.
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30
Number of apps
25
20
15
10
5
0 Dec-08 Jul-09
Jan-10 Aug-10 Feb-11 Sep-11 Apr-12 Oct-12 May-13 Nov-13
Figure 1. Number of available seizure management applications over time.
Release date The release date of the reviewed apps ranged from June 2009 to May 2013. The first app to be released was Seizure Disorder Coach on the iPhone,32 and the most recent one being Your Epilepsy Diary on Android.36 Since their first appearance on the market, the list of epilepsy apps has been rising rapidly, with nearly two-thirds of apps becoming available since 2012 (see Figure 1).
User ratings Application user ratings were obtained directly from the online app stores of the various smartphone platforms and were only included if the application had a minimum of five user reviews. Ratings were calculated in 0.5 increments ranging from zero to five. The majority of apps had no or fewer than five user reviews (n = 16; 57%) and were thus excluded from this analysis. Out of the remaining 12 apps, the best rated were E-Action Info (iPhone),19 Seizure Log (iPhone),23 Epilepsy Society (Android)35 and Young Epilepsy (Android).33 A full distribution of user ratings can be seen in Figure 2.
Download frequency Download figure estimates were obtained independently from xyo.net.16 The most downloaded app was My eDiary Australia (iPhone)30 with an estimated 39,000 downloads. During the time of review, only four apps had been downloaded more than 10,000 times23,30,31,43, and the vast majority of apps had less than or equal to 1000 estimated downloads. The general trend observed was that the apps which had been on the market for longer had higher estimated download figures.
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18 16
Number of apps
14 12 10 8 6 4 2 0
Nil
0-1
1.5 - 2
2.5 - 3
3.5 - 4
4.5 - 5
Figure 2. Distribution of application user ratings.
App development Health-care professional involvement, either directly as the app creator or indirectly as a source of information for app development or evaluation, was reported in 43 per cent of all reviewed apps (n = 12). In all, 10 of these apps were developed in conjunction with recognised epilepsy not-forprofit organisations such as the Epilepsy Society UK, British Epilepsy Association, Young Epilepsy and Epilepsy Action Australia,17,18,22,30,31,33–35,43,44 while a further two reported direct medical input from individual medical professionals.20,21
Content analysis A full list of the applications and how they ranked in the assessment criteria can be seen in Table 2. App content was divided broadly into either (1) education material or (2) tools to assist in seizure management. Out of the 28 reviewed applications, 8 featured primarily patient education material.19,25,29,32,37,38,40,41 A total of 10 contained only seizure management tools21,23,26–28,30,36,39,43,44 and 8 had a combination of both.17,18,20,22,31,33–35 In addition, two apps scored zero from the pre-defined criteria.24,42 Both of these claimed to be able to detect when the smartphone user may be experiencing a seizure and automatically alert specified contacts via an email or text-message- functions that were not tested as part of this study.
Apps providing health information Epilepsy education was conveyed primarily in the form of written content with only a handful of apps utilising illustrations, diagrams or video animations to present health information. Out of the five categories, it was found that general information on epilepsy and seizures was the most thoroughly covered with nearly half of all applications (n = 13; 46%) addressing this aspect of patient education. This was closely followed by education material on seizure first aid and safety (n = 11; 39%), general advice on living with epilepsy and potential seizure triggers (n = 9; 32%), and
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Table 2. Overview of seizure management applications, rank-ordered by content analysis score. App name
Platform
Cost (AUD) Patient Self-monitoring Overall score education (0–5) (0–3) (0–8)
Epi & Me20 Epilepsy Action18,34 Young Epilepsy17,33 Epilepsy Society35 Epilepsy Toolkit22 E-action Info19 Epilepsy Guide31 Epilepsia App21 Epilepsy App39 Epilepsy Vault40 Living With Epilepsy29,41 My eDiary Australia30 My Epilepsy Diary43,44
iPhone Android/iPhone Android/iPhone Android iPhone iPhone iPhone iPhone Android Android Android/iPhone iPhone Android/ Blackberry iPhone Android iPhone Android iPhone Android
Free Free Free Free Free Free Free Free Free Free 1.29/0.99 Free Free
4 4 4 3 3 4 3 0 0 2 2 0 0
3 2 2 2 2 0 1 3 2 0 0 2 2
7 6 6 5 5 4 4 3 2 2 2 2 2
Free Free 4.49 2.49 5.49 Free
0 0 1 1 0 1
2 2 0 0 1 0
2 2 1 1 1 1
iPhone
0.99
1
0
1
iPhone
Free
0
1
1
iPhone Android iPhone
1.99 Free 0.99
0 0 0
1 0 0
1 0 0
Seizure Log23 Your Epilepsy Diary36 Epilepsy Animations25 Epilepsy App Alert38 Seizures27 Seizure Alert and Recorder37 Seizure Disorder Coach32 Seizure Journal For Parents28 VNS Timer26 EpDetect42 fTEL24
information on anti-epileptic drug treatment (n = 9; 32%). The least well-covered topic area was advocating an active partnership with the healthcare team with only two apps clearly conveying this message.19,20 The comprehensiveness of information covered between the different apps varied, and certain apps were easier to navigate compared to others.
Apps providing seizure management tools Seizure diaries. A total of 18 apps17,18,20–23,26–28,30,31,33–36,39,43,44 (64%) offered functions for patients to track their seizures, making it the most commonly featured self-management component. Seizure diaries varied in the exact amount of information recorded, but all contained an option to enter a seizure event along with the date, time and duration of seizure. The majority of apps also allowed users to specify the seizure type as well as enter any triggers that might have precipitated the seizure (e.g. missed medication, lack of sleep or alcohol intake). Other features present included the ability to graph log entries over time so as to allow better visualisation of seizure control.
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Medication tracking. In all, 11 apps18,20–22,30,34–36,39,43,44 (39%) had features allowing patients to keep a track of their medication intake. Most of these apps allowed users to manually enter the medications they were taking along with the dosages and administration times. In addition, the majority also allowed users to set alarm reminders that would alert them at the specified times to take their medications on time. Video recording. Five apps17,20,21,23,33 (18%) featured video-recording capabilities that enabled users to capture real-time footage of seizure events. By selecting one of the menu options on the main interface, users were able to directly access the smartphone camera to record seizures. Depending on the application, the video would then either be stored in an inbuilt video library or incorporated as part of an event log in the seizure diary for access at a later date. All recordings could also be transferred onto other multimedia devices if required.
Discussion Smartphone platform and app growth The majority of apps were available on the iPhone or Android operating systems, with only one app being found on Blackberry, and none on Windows Mobile and Nokia-Symbian. This is not surprising considering that iPhone and Android currently hold the majority of smartphone market shares, accounting for 92.3 per cent of all smartphone shipments in the first quarter of 2013.45 It is also worth noting that while the number of epilepsy apps has grown steadily since their first appearance on the market, the total number is still considerably less than some of the other health and fitness apps available on this platform.46 However, with the continued rise in smartphone ownership, and the increasing recognition of smartphones as an innovative way of delivering healthcare to patients, we expect this number to continue to rise rapidly in the future.
Application content Although the quality of content among the applications varied, overall our findings supported previous research demonstrating an increasing number of health-care apps becoming available on the smartphone market but without the comprehensiveness of content and functionality that may be expected from such technology. We found epilepsy education to be poorly covered among the majority of applications. The information presented was often incomplete and did not address the breadth of topics recommended for people living with epilepsy. Topics areas such as epilepsy treatment, triggers and lifestyle factors were covered by less than one-third of all apps and only two apps directly advocated the benefits of an ongoing relationship with the healthcare team – something widely recognised as being an essential part of developing an effective, ongoing care plan.4 This, however, was not entirely unexpected. Abroms et al.,13 in one of the first studies to examine the content of smartphone health-care applications, demonstrated that the majority of iPhone apps for smoking cessation had low levels of adherence to clinical guidelines. Similar findings were also observed in apps for asthma self-management15 as well as those promoting strategies to assist in weight loss12 and abstinence from alcohol.47 On the other hand, it was perhaps not surprising that the seizure diary was the most utilised tool among the reviewed applications. Keeping seizure diaries has long been recommended as a useful intervention for epilepsy patients,48 and electronic diaries in particular serve to highlight some of the unique advantages of smartphone technology over more traditional methods of epilepsy management. These include but are not limited to improved accessibility and storage, remote
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data-sharing capabilities and the ability to generate automated graphs for better appraisal of seizure control.49 In contrast, other seizure management tools such as medication tracking and video recording were less well utilised. This was disappointing considering that virtually all smartphone devices have inbuilt video recording and reminder setting capabilities, and it would not have required a considerable effort to incorporate such features within the reviewed apps.
App development The current lack of regulation over the production or manufacture of health-care applications poses a problem for users when choosing a particular app and for health-care professionals when recommending one. Although regulatory bodies such as the US Food and Drug Administration agency (FDA), United Kingdom’s Medicine and Healthcare Products Regulatory Agency (MHPR) and the Australian Therapeutic Goods Administration (TGA), have made positive steps towards producing guidelines to better regulate medical applications, these do not currently extend to the majority of health-care apps on the smartphone market, including those reviewed in this study.11,50,51 As the reliability of content cannot be assumed, it becomes especially important for the declaration of any medical input in app development. In terms of epilepsy management, we found that 10 apps reported being developed in partnership with recognised health organisations, while a further two claimed direct input from individual doctors. The majority, however (n = 16; 57%), gave no source for their information. These findings were similar to those observed in smartphone applications for pain management,52 and highlight the significant gap still present in ensuring health-care apps available to consumers contain relevant and accurate information.
Top applications There were a limited number of applications which combined comprehensive, evidence-based information with reliable and supportive tools. The five highest scoring applications were Epi & Me,20 Young Epilepsy,17,33 Epilepsy Action,18,34 Epilepsy Toolkit22 and Epilepsy Society.35 All of these apps featured components of both epilepsy education alongside one or more of the seizure management tools listed above. In addition, of particular note was that all of the best scoring applications reported health-care professional input at some level in their development and all were available for free. This lends further support to the notion of health-care apps requiring additional regulation, as well as suggesting that the best applications are not necessarily the ones that consumers pay more money for. Screenshots of two of these apps can be seen in Figures 3 and 4.
Study limitations This study did have some limitations. First, as there are no current guidelines in place relating to the development of health-care apps, including in the area of epilepsy management, the assessment criteria for the content analysis were adapted independently through a report by the Institute of Medicine.6 Although these may not be specific to smartphone applications, we felt the proposed criteria could be reasonably expected to be present on this platform. In addition, we also verified the presence of similar recommendations in clinical guidelines published by other bodies such as the National Institute for Health and Clinical Excellence.4 Second, while the assessment criteria provided an indication of the quality of content within an app, the apps were not analysed for their usability with consumers. Thus, even though some apps may have ranked highly in our content analysis, they may not necessarily have been the most functional or easy to use. As such, given that overall app usage is likely to be impacted upon by a combination of the above two factors, we
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Figure 3. Main menu of Epilepsy Society35 (Android).
Figure 4. Example of a seizure log from Epi & Me20 (iPhone).
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believe this is a potential area for future research and something which would be best tested by recruiting epilepsy patients to test such apps in a real-life setting. Third, as none of the app stores provided any objective information on users, we could not comment on the demographics of users likely to use a particular app. Finally, not all claims made within the apps were analysed for accuracy, and although both authors worked in collaboration to identify the criteria for the content analysis, only the primary author coded each individual application.
Conclusion Emerging mobile health technologies like the smartphone have the potential to change the dynamics of epilepsy self-management and monitoring. Besides convenient access to relevant educational content, smartphone apps can offer additional functions ranging from inbuilt electronic diaries and medication reminders to seizure recording and data-sharing capabilities. The results of our review highlight a growing number of seizure management applications becoming accessible to individuals with epilepsy. Although the majority of reviewed apps were inexpensive, only a limited number combined comprehensive, evidence-based information with unique functionality and tools. There is scope for further evaluation of the currently available smartphone applications in terms of their overall usability, as well as a need to better regulate such apps to ensure improved compliance with established clinical guidelines. In turn, this will enable us to fully exploit the many potential benefits of smartphone technology in the area of epilepsy management and provide greater confidence to clinicians suggesting such apps to their patients. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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