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Caregiver Experiences, Treatment Decision-Making, and Unmet Information Needs During Pediatric Growth Hormone Therapy: A Nationwide Cross-Sectional Survey in Korea

Year: 2026

Type: article

Abstract: Background: Growth hormone (GH) treatment in children is increasingly used across diverse clinical indications, yet evidence regarding caregivers' experiences, decision-making, and information needs in routine practice remains limited. Objective: To investigate caregiver experiences, treatment-related decision-making, and unmet information needs associated with pediatric GH therapy in Korea. Methods: A cross-sectional online survey was conducted between October and December 2024 among 991 caregivers of children who had received GH injections within the previous 5 years. Participants were recruited using quota sampling based on the type and geographic region of prescribing institutions. The questionnaire assessed treatment background, decision-making processes, information needs, caregiver-perceived benefits, caregiver-reported adverse experiences, challenges during treatment, and overall satisfaction. All diagnoses, benefits, and adverse effects were caregiver-reported and not clinically confirmed. Results: Among participating caregivers, 36.5% reported that their child had an underlying condition, most commonly idiopathic short stature. Height growth was the most frequently reported reason for initiating GH treatment. Parents were the primary decision-makers, while 13.8% of caregivers reported that their child's agreement had not been confirmed before treatment initiation. Unmet information needs were most frequently related to treatment timing, differences among GH products, and potential adverse effects. Caregivers also reported challenges related to uncertainty about treatment timing, inconsistent clinical recommendations, treatment costs, and the burden of daily injections. Although caregivers generally reported positive treatment experiences, satisfaction was highest for healthcare accessibility and lowest for treatment costs. Conclusion: Caregivers of children receiving GH therapy reported substantial information needs and decision-making challenges despite generally positive treatment experiences. These caregiver-reported findings underscore the importance of improving communication, patient education, and shared decision-making to support informed treatment decisions in pediatric GH care.

Source: Patient Preference and Adherence

DOI: 10.2147/ppa.s640171

Authors: Yeryeon Jung, Dohee Ahn, Jeong-Yeon Kim, Ji Eun Yun

Institution: National Evidenc- based healthcare Collaborating Agency

Language: English

Topic: Growth Hormone and Insulin-like Growth Factors

Subfield: Endocrinology, Diabetes and Metabolism

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,836