Barriers to the Effective Use of Diabetes Self
Transcription
Barriers to the Effective Use of Diabetes Self
The 3rd National Graduate Conference (NatGrad2015), Universiti Tenaga Nasional, Putrajaya Campus, 8-9 April 2015. Barriers to the Effective Use of Diabetes Self-Management Applications Ananthidewi Maniam College of Information Technology, Universiti Tenaga Nasional, Malaysia. E-mail: [email protected] Jaspaljeet Singh Dhillon College of Information Technology, Universiti Tenaga Nasional, Malaysia. E-mail: [email protected] Abstract— Diabetes is a serious disease in which the levels of glucose (sugar) in the blood are too high. In people with diabetes the body is unable to properly use and store glucose. However, if patients could manage their health conditions effectively, they can prevent or delay diabetes complications. By introducing diabetes self-management (DSM) applications, patients with diabetes can gain the knowledge and skills needed to modify their behavior and successfully manage the disease and its related conditions. DSM applications can enable patients to take better care of their health and consolidate effective self-care habits into their daily lives. However, despite of the immense potential of such tools in empowering patients, many challenges remain in the design and use of DSM applications. In this study, we investigate the barriers that hinder effective usage of DSM applications for diabetes self-management. Results indicate that the primary barriers resulted from the limited access to the applications, a challenge to comprehend the technology and the inability to pick the right application that is clinically proven. The barriers to selfmanagement identified in this study are amenable to novel DSM applications that could improve health outcomes. Keywords— diabetes self-management; diabetes; selfcare; consumer health informatics I. INTRODUCTION Diabetes is often referred to by doctors as diabetes mellitus that describes a group of metabolic diseases in which there are high blood sugar levels continuing for a long time. Symptoms of high blood sugar include frequent urination, increased thirst, and increased hunger. According to the International Diabetes Federation, 387 million people have diabetes globally and almost 138 million people are affected in the Western Pacific Region, which is projected to rise to 202 million by 2035 [1]. There were 3.2 million cases of diabetes in Malaysia in 2014 [1]. Diabetes mellitus requires continuing medical care and patient’s commitment to reduce the risk of long-term disability and prevention problems. Poor health outcomes among patients with diabetes are due to poor self-management practices [32]. Diabetes selfmanagement (DSM) refers to personal actions towards diabetes mellitus, its treatment and progress of disease prevention. These actions include with medical management, role management, and emotional management and selfmanagement. Self-management can be achieved by leveraging DSM applications that are designed and developed to manage diabetes mellitus. These applications are tools that specially offer functionality and services to control diabetes. Healthcare providers should perform evaluations to determine patients’ knowledge and understanding of the disease and assess their ability to learn and apply new selfcare skills since diabetes requires daily problem solving to meet overall clinical outcomes [27]. Patient-centered care is an approach to ‘providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions’ [19]. Paradigm shift in the healthcare industry is apparent following from the emergence of advanced technologies made accessible on different platforms such as smartphone-, weband desktop-based applications. The focus of improving health outcomes is shifting gradually from doctors to patients which shows that more patient-centric applications are being designed and developed. Doctor-centric systems are important as they allow doctors to provide better treatments as well as follow up on patient health conditions, but patient selfmanagement can save cost, reduce burden on professional time, and most importantly encourage patients to become more involved in their own care and activated to better manage their symptoms [26]. Patient-centric health management systems are gaining rapid attention from healthcare consumers as enabler to encourage the development of health self-management initiatives that can enable patients to take responsibility towards their own care. Patient-centric care goes beyond educating patients about a diagnosis, potential treatment, or prevention methods. The fast growth in mobile and computer technology coupled with the advancement of data connectivity has resulted in increased interest and unparalleled growth in self-care applications for diabetes self-management. A variety of DSM applications are available on different platforms such as smartphones, web and desktop, which includes personalized decision support to achieve personal goals and to improve value of life. Desktop, laptop or handheld computers and mobile phones have the advanced processing power and connectivity to allow the patients to achieve better diabetes self-management. These devices also have the potential to be relatively cheap, easily distributable, delivered at multiple locations (communitybased, at home or on the move) at times convenient for ISBN 978-967-5770-63-0 315 The 3rd National Graduate Conference (NatGrad2015), Universiti Tenaga Nasional, Putrajaya Campus, 8-9 April 2015. patients, offer patients as many interventions to enable them to have knowledge on self-care and patients capable to produce better clinical outcome by their own [29]. Web-based applications are being developed for continuous selfmonitoring, feedback, and information exchange. These applications have improved diabetes patient’s awareness and knowledge towards self-management, the extent of behavior change, and clinical outcomes for a range of conditions. Smartphones have become a fundamental component of daily life for many people globally. Most people own mobile phones and have access to the internet. Advances in smartphones technology, web-based technology and wireless networks have resulted in increased adoption and enhanced capability, leading to high chances for improved diabetes selfmanagement [2]. Moreover, desktop applications which can work without internet connection provides program that can support people with diabetes. These applications can be installed on desktop computers and laptops. Patient’s data can be entered either directly from the software which is installed or by syncing/importing from a mobile device. DSM applications can aid diabetes patients to track almost all aspects of the diabetes treatment including their blood glucose levels, insulin dosages, weight, carbohydrate intake, and exercise. Apart from health monitoring, there are applications that integrate social aspects and experiencesharing among people with diabetes [5]. In spite of their immense potential of DSM applications in empowering patient to take charge of their healthcare, many challenges remain in the design and use of these applications. Although these applications are known to be useful for self-management, there are barriers which limit patients’ usage of these off-the-shelf applications. In this study, we investigate the barriers that hinder effective usage of DSM applications for diabetes selfmanagement. The emphasis is on DSM applications that are accessible via the following platforms: smartphones, web and desktop. These barriers were derived from previous studies. These barriers are amenable to novel DSM applications that could improve health outcomes. This paper is organized as follows. The first section summarises the related work that has been done about DSM applications and the second section explains the barriers to the effective use of such applications. The subsequent section discusses the results and the paper is then concluded in the final section with a summary and future work. II. RELATED WORK Previous studies have been conducted to identify the barriers and limitations to effective use of DSM applications. A review was conducted to specify the usability of smartphone applications and the limitations with the current state of the art [7]. Finding of this review explains how to improve the medical legitimacy of digital health solutions and they agreed that despite the abounding number of options on the market, significant barriers to entry remain for diabetes-related smartphone applications [11]. Researchers in Germany conducted a systematic review of diabetes applications for iOS and Android. Most of the iOS applications required payment while most of the android/cross-platform applications were free and over half of the applications only had one function which is Glucose Logbook [11]. A review attests to the value and potential for diabetes applications to improve diabetes selfmanagement. However, it is important to note that smartphone applications-based self-management is not a “silver bullet” and it is critical to understand that its effect is based on strong behavioral change theory [2]. While a wide selection of smartphone applications seems to be available for people with diabetes, this study shows there are huge gaps between the evidence-based recommendations and the functionality used in study interventions or found in online markets. Result of this study confirms that personalized education as an underrepresented feature in diabetes smartphone applications and its potential remains largely unexplored [8]. Previous research efforts provide less emphasis on barriers to effective use of DSM applications and are mostly focused on the implementation of novel DSM applications as an effective means to reduce the progression of diabetes and improving quality of life. Previous study concentrated on applications that were designed for frequent logging of data, but which also offered the capability for data visualization, transmission and personalization. This research results in terms of exposing problems with efficiency and various other attributes corresponding to smartphone heuristics, as well as helping to elicit functional requirements, and this has resulted in a list of guidelines for development [17]. III. BARRIERS TO DIABETES SELF-MANAGEMENT APPLICATIONS The common barriers that obstruct patients’ to accept and utilize DSM applications can be classified according to different platforms: smartphones, web-, and desktop-based applications. The classification helps to form a better understanding about the requirements and expectations of patients towards the adoption of DSM applications. A. Web-based DSM Applications The Internet is an expanding source of information and resources. Today’s health care industry is highly dependent on the internet that have changed the way we communicate with the physician or doctors. Web-based interventions have the potential to bridge gaps in diabetes self-care and selfmanagement. Web-based DSM applications allow patients to upload data directly to the applications, receive feedback and support at a time and place most convenient for them, and not limited to clinicians' office hours. However, in spite of the immense potential of these applications in enabling patients to manage their conditions online, many challenges remain in the design and use of web-based DSM applications. Examples of web-based DSM applications are mysugarlevel.com, Glooko.com, and GlucoseBuddy.com. 1) Poor user friendliness: Patients forgot to use the application because of the absence of a reminder feature (lack of push factors). The usability tests showed that patients wished to get reminders to use the application, preferably through their regular (daily) email program. Patients wished to get notifications on newly posted and updated information on ISBN 978-967-5770-63-0 316 The 3rd National Graduate Conference (NatGrad2015), Universiti Tenaga Nasional, Putrajaya Campus, 8-9 April 2015. the site. Integrating the web application with existing traditional “offline” care could also serve as a push factor. Patients fail to gain motivation from their general physician to use the DSM application [28]. 2) Competing life concerns: Diabetes patients compete with their own life concerns such as health issues surround migraines and fatigue. They have no free time to use the available applications and their lifestyle and other stresses from business can be a major barrier for them to use webbased DSM applications [14]. 3) Competing health concerns: Those people who have diabetes not only poses diabetes but also compete with other health concerns such as cancer, stroke and heart disease. Their concerns are not only on diabetes self-management but also on other diseases. 4) Frustration with diabetes: When diabetes patients know that their blood sugar level is really high, they already know it’s high and they refuse to take medication and even not managing their health. So to log the fact that they are high, ends up making them to be more frustrated. Their concern is only the frustration but not to find methods to manage the illness [14]. 5) Limited access: Website use by patients was limited. They competing priorities in their lives and website accessibility were barriers to use. Most people do not have too much time to look access the applications because they do not have a computer at home [28]. 6) Login and password requirement: Some people do not prefer using the available DSM applications because most of the applications require credentials such as login ID and passwords. They keep forgetting their passwords and hence they avoid using the web applications. [14]. 7) Little adherence to health promotion theories: Principles of effective education, self-management support, and behavior change have not been incorporated into current diabetes-related websites [15]. Table I shows the barriers to the effective use of web-based DSM applications. TABLE I. SUMMARY OF BARRIERS TO THE EFFECTIVE USE OF WEB-BASED DSM APPLICATIONS Poor user friendliness Absence of reminders Competing life concerns Work/business stress Competing health concerns Frustration with diabetes Limited access Other health concerns High blood sugar Frustrate with illness Competing priorities No computer at home Login and password requirement Keep forget password B. Smartphone-based DSM Applications The smartphone interface supports a limited subset of functionality that enables users to perform common tasks. Advancements in smartphone technology coupled with the proliferation of data connectivity have resulted in increased interest and unprecedented growth in smartphone applications for diabetes self-management. Smartphones are also equipped with DSM applications which must be downloaded and installed from an application market place such as Apple store, Android market and blackberry that can enable patients to better manage their health conditions. Examples of such applications are Glucose Buddy, Diabetes Pilot, and iDiabetes. A smartphone application is designed specifically for smaller screens and touch-screens. These applications can aid diabetes patients to monitor their blood sugar levels conveniently. Once installed on the phone, users can use these applications without accessing the Internet. Nevertheless, many challenges exist in the design and use of smartphone-based DSM applications. As new applications continue to emerge and become more refined, smartphone users will have more options to conveniently track their glycemic control and overall health, which can ultimately improve their ability to effectively manage their diabetes. 1) Non-evidence-based applications: Although the number of DSM applications has increase rapidly, patients do not know whether the applications are evidence-based or were developed by reliable health or medical organizations. Almost anyone can write and post a smartphone app. Most applications are not clinically relevant and do not follow any guidelines [11]. 2) Security and confidentiality: Another concern, especially with personally owned smartphones, is security. Smartphones are embraced for their convenience. Malicious software ("malware") for cell phones could pose a greater risk for consumers' personal and financial well-being than computer viruses. However, smartphone used to access diabetes applications raised several security- and privacyrelated issues, such as vulnerability to loss personal information’s due to small size, authentication, encryption of data, and use of unsecure public Wi-Fi [12]. 3) Connectivity: The slow and unreliable wireless network connection with low bandwidth is a common hindrance for smartphone-based applications [34]. Strength of signals and data transfer speed in a wireless network may vary at different time and locations, compounded by user mobility [33]. This mainly affects those smartphone users who were trying to install a DSM application on their mobile. 4) Manual and limited data entry: Patients tend to perceive data entry automation as an important driver for ease of use and ultimately for satisfaction with the technology. Small buttons and labels limit users’ effectiveness and efficiency in entering data, which may reduce the input speed and increase errors. The data entry method is crucial in diabetes management applications, since people are expected to log data frequently, and they could be hindered by peripheral neuropathy - a common complication of diabetes [17]. ISBN 978-967-5770-63-0 317 The 3rd National Graduate Conference (NatGrad2015), Universiti Tenaga Nasional, Putrajaya Campus, 8-9 April 2015. 5) Lack of key features: The existence of thousands of applications claiming to assist with diabetes self-management, the diabetes app market remains relatively immature with no clear dominating market leader. Among thousands of available DSM applications there are very few with dominating key features. Smartphone users will have more options to conveniently track their glycemic control and overall health, which can ultimately improve their ability to effectively manage their diabetes. Hence, they expect better and enhanced features to manage their self from diabetes [6]. 6) Difficulty in understanding the technology: Moreover, the major technological improvements of both hardware and software are still relatively new and thus, sometimes unreliable. It might be at a disadvantage if the use of smartphones becomes more requisite within medicine. Similarly, elderly patients may find it difficult to use and interpret the information provided to them via their smartphones, possibly putting them at greater risk than those who are more technologically savvy [9]. 7) Programs too difficult to navigate: Programs on smartphones are too small and particularly fonts that become smaller or vanish off the side of the screen as the length of the text increases. The interface of the DSM applications shows very unclear graphs and poor color contrast. Icons that change with a “long-press” (holding down the button too long) makes the user to skip using the applications. The buttons even more sensitive compare to computer-based applications. Direct presentation of most applications pages on small smartphone devices can be aesthetically unpleasant, un-navigable, and in the worst case, completely illegible [35]. Table II shows the barriers to the effective use of smartphone-based DSM applications. work when there is no internet connection. Examples of available desktop applications on market are SiDiary, Diabetes Pilot and Glucofacts Deluxe. Diabetes Pilot is a software developed to aid diabetics manage their diabetes though logging glucose readings, medications, weight, blood pressure and exercise and analyzing the data through log books, reports, and charts while Glucofacts Deluxe is for charting blood glucose levels and seeing patterns in levels using several useful graphs [21]. 1) Less computer use: There are relatively very low use of computers among diabetes patients. This is because most of them are not technologically savvy and not able to understand the new technology. Patients do not have sufficient time to use computer at home or at office. This cause them not to use the DSM applications [31]. 2) Low health literacy: The desktop or laptop users with lower health literacy demonstrated gains in knowledge, selfefficacy, and perceived susceptibility to complications compared with those having higher health literacy. Diabetes patient’s procrastination behavior leads to very low concern on their health and they fail to manage their health properly [28] 3) Lacks proper references for medical information: SiDiary app does not contain any references to source materials but does present the user with a disclaimer. This is because there is no internet connection for it to provide up to date information. In term of real world applicability, SiDiary app lacks sources for the information but it can be useful [21]. Table III shows summarizes common barriers to the effective use of desktop based DSM applications. TABLE III. SUMMARY OF BARRIERS TO THE EFFECTIVE USE OF SMARTPHONE-BASED DSM APPLICATIONS SUMMARY OF BARRIERS TO THE EFFECTIVE USE OF DESKTOP-BASED DSM APPLICATIONS TABLE II. Non-evidence based applications Security and confidentiality Connectivity Manual and limited data entry Lack of key features Difficulty in understanding the technology Programs too difficult to navigate (Small screen size) Thousands of applications Not clinically relevant Malware attack Lose of personal data Slow and unreliable network (data) Low signal strength and data transfer Not ease of use Small buttons No clear dominating market leader Not technologically savvy Too small text Unclear graph Poor color contrast C. Desktop-based DSM Applications Desktop based programs work on most home computers running Windows and on Macs. Most programs can be downloaded from the manufacturer’s web site, and many are also available on CD upon request. These applications can Less computer use Low health literacy Lacks proper references for medical information IV. Do not own a computer Not technologically savvy Insufficient of time Less awareness towards diabetes Procrastination Does not contain any references to source materials DISCUSSION DSM applications are widely available and continuously being developed for different platforms. In the above section, we have identified the barriers that limit the effective usage of DSM applications that were categorized into different platforms, i.e. web-, smartphone- and desktop-based. Each of these categories of applications differs in terms of the user interface, development, capabilities, monetization, and method of delivery. Since there are different needs to meet for each category of DSM applications, classification of barriers for each category provides developers with a better understanding of the needs and expectations of patients towards specific type of DSM applications. We noted from previous studies that the focus had mainly been on the features and implementation of DSM applications. ISBN 978-967-5770-63-0 318 The 3rd National Graduate Conference (NatGrad2015), Universiti Tenaga Nasional, Putrajaya Campus, 8-9 April 2015. Hence, this study is essential to diabetes patients as well as healthcare professionals, and application developers where it can enable them to identify the major barriers. Such identification could lead developers to be more alert about these issues and possibly address these issues in the design and development of novel applications. Most of the barriers revealed could be managed by involving the target users, i.e. diabetes patients, in the development process of the applications from the outset. Usercentred methods could be useful in meeting the needs and expectations of potential users of these applications. In addition, health behaviour change theories should be integrated to realise applications that would bring positive health outcomes, e.g. encourage users to take charge of their health and most importantly to be persistent in looking after their healthcare independently. For instance, DSM applications could be designed based on effective health behavior change theories such as self-efficacy which refers to “beliefs in one’s capabilities to organize and execute the courses of action required to produce given attainments”. DSM applications designed using this theory can allow patients to adopt the applications to their own specific needs, because patients are increasingly demanding appropriate approach to a high level of personalized health care [27]. The outstanding integration, platform differences, and security issues need to be solved to improve the development of the applications that are more integrated and secured [20]. Clinical guidelines highlight the role of self-management education as an essential part of diabetes self-care and most DSM applications that aim to support self-management tasks do not integrate educational information [12]. There is also a need to develop standards for smartphone applications so that they can be user-friendly and the patients feel secure to use the applications for DSM. With the implementation of such applications the main determinant of the DSM app’s value may ultimately be its ability to provide meaningful, accurate, and timely information and guidance to the diabetes patients in order to serve the vital purpose of improving patient health care. V. conditions. DSM applications are available on both specific as well as cross-platforms platforms. In this paper, we investigated the barriers that limit the effective usage of DSM applications by diabetics. In particular, this paper provides a summary of the barriers to use DSM across three different platforms, i.e. smartphones, web and desktop. This work will be useful to system designers and developers for implementing novel DSM applications. Some of the main barriers that limit the usage of DSM applications include usability, security issues, unfamiliarity with the technology and inability to select suitable evidence-based application. Now that we have identified the factors that influence patients’ intention to adopt DSM applications, we are geared to develop an acceptance framework to increase the effective and widespread usage of these applications by diabetes patients in taking control of their health conditions. 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