The Use of Mobile Technology for Intensive Training in Medication Management in the Pediatric Population

Sickle cell disease (SCD) is a chronic disease for which complications include acute chest syndrome, painful vaso-occlusive crisis, and stroke. There has been increased use of chronic transfusions to prevent and treat complications associated with SCD (Blinder, 2013), however, the result is iron overload for which complications include liver failure, heart failure and death. (Niederau, 1996; Brittenham, 1994; Harmatz, 2000) To effectively prevent and treat iron overload, chelation with oral medications must be taken correctly (Kwiatkowski, 2004). Depending on the method used to measure medication compliance, adherence varies between 43% and 76%. (Raphael et al., 2009; Alvarez et al., 2009) The variability underscores the need to better investigate and improve adherence. The success of treatment plans requires collaboration among patients, families and providers to take prescribed medications. We sought to implement mobile technology to facilitate this collaboration, while at the same time providing education and engaging both patients and parents.

We performed a feasibility study using an original mobile application to assess adherence with oral chelation therapy and provide a platform for education modules. Eligible patients had a diagnosis of SCD or thalassemia with a history of iron overload, were ≥5 years of age and had access to a phone or other mobile device with the iOS operating system. Devices were provided for use if needed. During the first 30 days of the study, participants were asked to self-record up to a 5-minute video of daily medication administration. They performed this with our mobile application, which we could review and track. On day 2-3 of participation, they received a generic welcome message via the application. On day 7 of participation, they received a personalized message of encouragement for consistent use, or a message prompting them to try harder for daily use. Weekly, for the remainder of the first month, they received generic text ‘pop-ups’ on the application. For months 2-3, patients were then asked to do a short photo log of daily medication administration. For months 4-6, they were asked to maintain a log and continue to record videos if they desired. In addition, during the initial 3 months, patients participated in educational modules and quizzes related to SCD/thalassemia, iron overload and chelation therapy. Data was analyzed starting after one week of participation.

Eight patients (4 males and 4 females, median age 12.5 years old, range 8-19) have been consented to participate. Seven patients have SCD and 1 has thalassemia major. We have analyzed 106 data days for 5 patients; Two patients have not yet reached 1 week of participation, and one patient has been temporarily excluded due to difficulties with internet connectivity and inability to confirm entries. Compliance of recording ‘selfies’ was 84%. Average length of ‘selfie’ videos was 12.7 seconds for male participants and 74.7 seconds for females (range 3 to 300 seconds). Videos reviewed also included: messages to providers, indications of difficulties with taste, and interaction with parents while preparing medication. Three patients have returned for 30-day follow up. Mean ferritin in these patients prior to enrollment was 1948.3 ng/ml (SD 758.4) and at one month follow-up was 1589.3 (SD 147.6).

This study illustrates that mobile technology in the form of an interactive application is a feasible method that can be used to increase adherence to therapy plans, such as oral chelation therapy. We were able to accurately document adherence (84%) using our newly developed mobile app and are interested to see long-term compliance following completion of the study. Interestingly, we also report longer ‘selfie’ videos for females and may argue for gender specific recommendations for improving compliance to treatment plans. Detailed review of videos also revealed information that may further assist in compliance such as identification of improper mixing. Further expansion of this study and evaluation of laboratory markers (such as ferritin) at 3 months will additionally support the use of a mobile technology based intensive training program for patients with SCD. Efforts are also underway employing a similar strategy for hydroxyurea adherence. In summary, we believe mobile technology has become an integral part of health care management and has the potential to improve care for patients with chronic illnesses.