Chronic disease presents a growing challenge to the health and social care systems in Canada. More than 80% of primary care visits and two-thirds of medical admissions into hospital emergency departments are related to chronic diseases. Effective chronic disease management can result in improved health outcomes and increased quality of life [1
] and others have proposed a practical framework for chronic disease management. Principally, it proposes that an “informed, activated patient” is needed to provide productive interactions with a “prepared, proactive practice team” [2
]. As well, the Health Belief Model introduced the notion of creating a “cue to action” for the patient that elicits health behavior change [3
]. Creating such conditions has been used in the design of many chronic disease management interventions across diverse disease populations. One group remains particularly elusive in creating conditions for positive health behavior change, that being adolescents with type 1 diabetes.
Type 1 diabetes mellitus is a chronic condition that is diagnosed in childhood and requires a lifetime of self-management at home and in the community between regular consultations with the health care team. Intensive self-management characterized by frequent self-monitoring of blood glucose is critical in type 1 diabetes to achieve good metabolic control. Improved blood glucose control has been shown to reduce mortality and the incidence of severe and costly complications such as renal and cardiovascular disease. Intensive self-management, including measurement of blood glucose at least 3 times per day, makes it theoretically possible to maintain near-normal blood glucose levels in patients with type 1 diabetes [4
Despite its importance and a theoretical ability to optimize blood glucose control, worldwide data have repeatedly demonstrated that adolescents do not meet therapeutic targets [5
]. Moreover, data from an international study group on childhood diabetes have not demonstrated a correlation between insulin regimen and glycemic control [6
], suggesting that factors such as self-care behaviors and educational models likely have substantial impact on outcomes and that increased attention to these factors may lead to improved blood glucose control.
It has been well established that many struggle with interpreting and responding appropriately to the complex data sets that are part of effectively managing type 1 diabetes in real time [7
]. Intensive self-management is a challenge for everyone with diabetes, but the mismatch between the demands of intensive self-management tasks and the developmental stage of adolescence often makes self-management even more difficult for this age group and may result in suboptimal glycemic control.
However, there is some recognition and willingness on the part of parents to use technology to assist in the management of their child’s diabetes, particularly when parents have felt that they have some unmet needs with respect to their care [8
]. As well, given adolescents’ propensity for new technology, such interventions may provide important opportunities to engage them and to help them improve self-management skills and behaviors [9
]. A recent global survey indicated that adolescents around the world are adopting mobile technology faster and in a more immersive way than any previous generation. Recent Pew Internet & American Life Project reports indicate that the mobile phone has become the primary communication tool for the majority of adolescents in the United States; 75% of 12- to 17-year-olds now own mobile phones (up from 45% in 2004) [10
]. Text messaging via mobile phone has become the most frequent form of adolescent interaction with friends (overtaking phone calls and face-to-face communication) [10
The use of the telephone alone, however, has not had much clinical impact. A recent study showed how traditional cognitive behavior interventions such as educational sessions through phone calls had little value in changing negative health behaviors in children with type 1 diabetes [11
]. An Australian study of 123 children with an average age of 11.9 years showed that a telephone call intervention by diabetes care providers biweekly did not result in improvements in glycated hemoglobin (HbA1c), diabetes knowledge, psychological parameters, or compliance [12
]. A recent systematic review indicated that, although communication technologies may increase the frequency of contact between patient and health care professional, it remains unclear whether this results in improved outcomes [13
More advanced telehealth methods have not fared better. In a study by Lehmkuhl and colleagues [14
], the outcome improvements were unclear and data showed decreased engagement with parents. Youths in treatment reported increased unsupportive and decreased caring parental behavior, although the intervention did improve access to knowledgeable providers and resulted in a clinically significant improvement in glycemic control. There was, however, no significant difference when compared with the control group [14
]. Further, a systematic review of type 1 diabetes mobile phone-based interventions indicated that the approach holds great promise, but few studies have shown definitive proof of improved health outcomes in this population [15
In contrast, in the adult population with type 2 diabetes, a recent randomized controlled trial showed a 1.9% drop in HbA1c in the intervention group using a mobile phone-based remote monitoring and coaching system [16
]. The technology used in this and other studies reflects the growing use information and communication technologies (eg, Internet, telephone, mobile phone, and Bluetooth) to track and transmit blood glucose results among adults with diabetes. A systematic review of 17 diabetes telemonitoring studies in adult populations has examined data quality aspects of telemonitoring, effect on clinical outcomes, and impact on behavior of patients and clinicians [17
]. Limited work has been done in the development and evaluation of these technologies to enhance self-care in adolescents with type 1 diabetes.
Self-monitoring of blood glucose is critical for effective self-care of type 1 diabetes, but adolescents with diabetes may also require decision-support aids to effectively contextualize a blood glucose result and take appropriate action to optimize glycemic control. The use of remote monitoring technology is likely not enough to elicit positive health behavior in this population. As well, the theoretical foundation of the behavioral intervention that is being delivered should be well established and proven. Heron and Smyth [18
] recommended, based on their findings of a systematic review of ecological interventions for health behavior, that mobile technology-based ecological momentary interventions can be effectively implemented for a variety of health behaviors and psychological and physical symptoms. They also recommended the use of ecological momentary interventions that are dynamically and individually tailored and ecologically sensitive [18
Conclusive methods of engaging the adolescent population in self-care remain experimental and elusive. The present study attempted to engage patients through the use of various approaches including reminders and cueing, social media communication, and the gamification of routine diabetes management tasks. As well, we designed this study to evaluate whether technology can be used to assist adolescents with self-care behaviors with a long-term objective of using technology to improve glycemic control among adolescents with type 1 diabetes.
This study engaged adolescents with type 1 diabetes, their families, and care providers in the design, development, and pilot evaluation of a home- and community-based diabetes telemanagement system. Given the ubiquity of mobile phones as a tool of daily living for many adolescents, we hypothesize that there may be a natural fit between the system and the target population. Hence, the intent of this study was to design, develop, and pilot an mHealth intervention for the management of type 1 diabetes in adolescent children.