Table 4:
Suggestions for Enhancements of the Adherence Intervention
AYAs | Parents | HCPs | |
---|---|---|---|
Coach | Could be a peer coach or support person Could work to support group session Should be someone they can personally identify with that understands transplant life and can help master medication management skills |
Should explain what parents should expect at each post-transplant phase, especially in the first 3 months post-transplant Advise on how developmental stages influence how a parent might approach medication management and adherence Could be a peer |
Would need knowledge and skills in communication and behavior motivation Could serve as a liaison between the AYA, parents and transplant team |
Action Plans | Useful only when a problem with adherence is identified or in special circumstances | Should outline how to help their children, including when and how to execute plans | Universally viewed positively, but unclear how to integrate plans into clinic flow |
ePillbox Design | Need to detect when the pills were removed from the compartments Should send immediate confirmatory text notifying parent that correct compartment was opened and pills were taken at appropriate time Need reminders when pills are due Compartments should snap together and pull apart like a pill organizer for portability |
Need sensor that detects opening and closure of the compartments Need a warning alert after the medication should have been taken if no response Pill compartments should separate to take a few doses away at a time Should provide alert when ePillbox is empty/needs to be refilled |
Size is important for portability and discretion Build in individualized rewards and motivators Include ability to connect with social media (e.g., facebook, IMessaging) Avoid potential for ‘tricking the system’ Should allow for synchronization to AYA’s phone (e.g., for alerts about medication times, appointments) |
Website Design | Provide summary report listing how many medications were taken on time out of total number possible Include educational material to help them learn their medications Send an alert when ePillbox is empty/needs to be refilled Need a way to post a note to HCP about why a dose was late or missed |
Provide summary report listing how many medications were taken on time out of total number possible Include personalized quizzes related to medications Send immediate confirmatory text notifying parent that correct compartment opened and closed at appropriate time Send warning alert after the medication should have been taken if no response Provide decision support about what to do when AYA is late in taking medications Have ability for multiple people to receive alerts |
Merge sources of data about adherence (ePillbox, electronic medical record) Send feedback about adherence to clinicians via web or electronic health record Allow alerts, timing, and mode of alerts to be customized based on AYA preference AYA and family should decide who should have access to data on website Allow HCPs to view patterns and trends in medication taking Expressed concerns about amount of data that would be generated and liability associated with monitoring |