ESPE Abstracts

Background: The emotional distress of caregivers (i.e., parents) of children with long-term conditions affects their self-management behaviors, including treatment adherence. These conditions are diverse and prevalent, including diabetes, obesity, and growth hormone disorders (GHD). The caregivers’ emotional well-being is then a core aspect of their own quality of life, and their children’s. Emerging digital therapeutics solutions may improve such caregivers’ distress, leading to better adherence. The Adhera® Caring program is a mobile-based digital therapeutics solution for caregivers. This program includes: 1) self-management education, 2) mindfulness-based cognitive behavioral therapy. and 3) personalized motivational messages. The selection and personalization of the motivational messages were powered by Adhera Health’s Health Recommender System which uses the caregivers’ profiles and their message rating history to find the most relevant messages for them using a machine learning approach.

Aim: To assess the feasibility of using Adhera® Caring to support the mental wellbeing of caregivers of children with GH treatment as part of regular clinical practice.

Methods: A mixed-methods approach with two sub-studies (Clinical Trial Registration: NCT04812665). Caregivers of children with GHD that use the easypod® (Merck KGaA, Darmstadt, Germany) injection device with sub-optimal adherence are identified in the easypod® Connect Dashboard – a software providing access to patient adherence data. The first sub-study consists of a trial with caregivers (n=10), who were onboarded to the Adhera® Caring Program by their healthcare professionals. After 30 days, a semi-structured interview was conducted. The second sub-study consists of a prospective non-randomized study for the same type of caregivers (n=55) using the digital solution to assess their engagement, treatment adherence, quality of life, and mental wellbeing using validated questionnaires.

Results: The first sub-study was completed in 2021, showing a high engagement of caregivers with the solution (more than 90% adherence to educational content). The thematic analysis of the interviews revealed that some caregivers had negative emotional experiences (e.g., fear of needles) prior to enrolling in the digital program - often linked to poor child-parent communication. However, the Adhera® Caring Program's actionable education contents and mental well-being activities were useful to reduce the stress related to their child’s condition self-management and the injection-related stress. The results of the second sub-study are expected by Q3 2022.

Conclusion: The Adhera® Caring Program shows a promising potential to support the emotional self-management of caregivers of children undergoing long-term pharmacological treatment.