Enhancing Adherence and Mental Well-Being in Pediatric Growth Hormone Therapy: Feasibility Prospective Observational Study of a Family-Centered Digital Companion

TL;DR

A digital program improved treatment adherence and mental health in families of children receiving growth hormone therapy.

Contribution

The study demonstrates the feasibility and effectiveness of a family-centered digital intervention in improving adherence and mental well-being in pediatric growth hormone therapy.

Findings

The digital program increased adherence from below 85% to optimal levels in 75% of families.

Caregiver depression, anxiety, and stress symptoms significantly decreased after the intervention.

The program improved psychological, emotional, and social well-being of caregivers.

Abstract

Managing a child undergoing growth hormone treatment (GHt) can be burdensome for the families, which can lead to psychological problems and poor treatment adherence. The Adhera Caring Digital Program (ACDP) is a mobile-based digital health intervention designed to support the physical and mental well-being of families of individuals with chronic conditions.

This study aimed to evaluate the clinical feasibility of a digital intervention to support families by focusing on caregivers of children undergoing GHt and its impact on treatment adherence.

This is a prospective observational study. A total of 51 caregivers of children undergoing GHt with low adherence (below 85%) to treatment were recruited at the Pediatric Endocrinology Unit at the Miguel Servet Children’s University Hospital and enrolled into the ACDP for 3 months.

A total of 51 parents participated in the digital intervention for 3 months. The use of ACDP was associated with a significant increase in adherence rate (P<.001). At baseline, all families had suboptimal adherence (below 85%), and after the intervention, 75% (n=38) of the families reached optimal levels of adherence. Also, the perceived pain of injection was reduced, as well as anxiety and stress. Initially, 21.56% (n=11) of caregivers reported depression symptoms, categorized as mild (11.76%, n=6), moderate (7.84%, n=4), and extremely severe (1.96%, n=1), while post intervention, only 1.96% (n=1) of caregivers reported depression as “severe.” Anxiety levels at baseline were reported by a total of 23.53% (n=12) of caregivers (mild: 7.84%, n=4, moderate: 13.73%, n=7, and severe: 1.96%, n=1). After the intervention, only 11.76% (n=6) reported mild (5.88%, n=3) or moderate (5.88%, n=3) anxiety levels. Initially, 23.5% (n=12) of caregivers reported stress as mild (7.84%, n=4), moderate (13.72%, n=7), and severe (1.96%, n=1) stress, and following the intervention, these symptoms reduced to 7.84% (n=4) (mild: 5.88%, n=3, severe: 1.96%, n=1).

The ACDP is a promising tool, and it has been demonstrated to significantly increase the adherence rate, adding value to the patient and caregiver journey, and improving the management of growth hormone deficiency while promoting the overall well-being of family caregivers. Our results show that the digital support provided by the solution significantly increased the quality of life of the caregivers by increasing their psychological, emotional, and social well-being and decreasing their depression, anxiety, and stress symptoms.

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