Caregiver Experiences, Treatment Decision-Making, and Unmet Information Needs During Pediatric Growth Hormone Therapy: A Nationwide Cross-Sectional Survey in Korea.
- 1Division of Healthcare Research, National Evidence-Based Healthcare Collaborating Agency, Seoul, Republic of Korea.
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.
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BibTeX
@article{jung2026caregiver,
title = {{Caregiver Experiences, Treatment Decision-Making, and Unmet Information Needs During Pediatric Growth Hormone Therapy: A Nationwide Cross-Sectional Survey in Korea.}},
author = {Yeryeon Jung and Dohee Ahn and Jeong-Yeon Kim and Ji Eun Yun},
journal = {Patient preference and adherence},
year = {2026},
month = oct,
doi = {10.2147/ppa.s640171},
url = {https://europepmc.org/article/MED/42968824},
note = {CC BY-NC},
}
RIS
TY - JOUR
TI - Caregiver Experiences, Treatment Decision-Making, and Unmet Information Needs During Pediatric Growth Hormone Therapy: A Nationwide Cross-Sectional Survey in Korea.
AU - Yeryeon Jung
AU - Dohee Ahn
AU - Jeong-Yeon Kim
AU - Ji Eun Yun
PY - 2026
DA - 2026/10/28
JO - Patient preference and adherence
DO - 10.2147/ppa.s640171
UR - https://europepmc.org/article/MED/42968824
AB - 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.
SN - 1177-889X
ER -