The Problem
Patient health management in the context of chronic illness is often characterized by poor adherence to complex daily treatment regimens, which limits the overall effectiveness of treatment. Mobile health technology has the potential to increase patient adherence, facilitate patient-provider communication, and improve disease knowledge, thereby enhancing health management for patients with chronic diseases such as sickle cell disease (SCD) for better health outcomes. SCD is an inherited blood disorder that affects 1 in 400 to 500 African American newborns in the U.S. annually. Associated complications in SCD include vaso-occlusion, pain crises, organ damage, high risk of stroke, neuropsychological sequelae, and low quality of life. Given these complications, SCD requires a high level of comprehensive care for acute and chronic health management.
Despite clear recommendations for optimum health outcomes, adherence to prescribed medication and health management regimens is typically low to moderate, but has been reported as low as 12% based on pharmacy refill data. Cited barriers to adherence in SCD include resource constraints (e.g., unable to attend clinic visits or travel to refill prescription), poor provider-patient communication, and lack of disease knowledge.
Our Solution
We used a self-developed mobile application to teach patients about the importance of taking their medications, record ‘selfie’ videos to document they took their medications, and receive encouragement videos from the provider team. This solution has fully integrated (a) patient education, (b) provider communication, (c) intensive intervention and training for medication compliance, (d) symptom tracking and intervention monitoring, and (e) increased self-efficacy for independent health management, into a single user-friendly mobile application.
Impact
Patients and caregivers endorsed high levels of acceptance, ease of use, and satisfaction with the intensive training program. Participants demonstrated significant increases in Medication Possession Ratio (p<0.001) and sustained improvements in disease knowledge (p<0.001).
Compared to non-adherent youth, adherent participants demonstrated significant decreases in pain (p<0.05) and caregiver burden (p<0.05). Children who were adherent reported quality of life and overall SCD-related functioning at a clinically-significant higher level when compared to those who were non-adherent (p<0.05).
Importantly, patients who had at least 1 entry in the app had a 77% compliance rate to record and take their medications, much higher than historical rates.
