Exploring Attitudes of Primary Caregivers Towards Pediatric Tissue-Based Research using Large Language Models: Insights from Rural and Urban Community Calls and Surveys.

OBJECTIVES

Explore the perspectives of primary caregivers towards pediatric tissue-based research participation.

DESIGN

Cross-sectional.

SETTING

Two academic pediatric gastroenterology sites in the United States, including one serving a largely rural referral population and one urban clinic population.

PARTICIPANTS

Primary caregivers of children who underwent endoscopy between 2017-2018 at UVA or were seen in the clinic setting between 2024-2025 at Tulane and referred by their child's gastroenterologist to complete an electronic survey.

MEASURES AND ANALYSIS: Primary caregiver attitudes, motivations, and concerns toward pediatric tissue-based research were explored using descriptive-focused coding in NVivo and a large language model (LLM) processing pipeline based on OpenAI's GPT-4 for thematic, emotional, and sentiment analyses.

RESULTS

Data were analyzed from 92 primary caregivers. Overall, respondents were amenable to having their children provide specimens for research. Primary motivations included a desire to help others or advance science, and perceived medical benefits for their child so long as specimen collection did not cause additional distress. Discomfort with participation was often linked to prior traumatic clinical experiences, concerns about additional biopsies causing unnecessary discomfort, or privacy issues. A desire to help others and potentially their own child was the strongest motivator for participation, while scheduling constraints and perceived risks to the child's health were the main barriers.

CONCLUSIONS

At both sites, primary caregivers expressed strong willingness to participate in pediatric research. Primary concerns included perceived invasiveness of biospecimen collection and potential for additional discomfort. Limitations of the study included the unstructured nature of the data making the analysis and interpretation challenging. Strengths included two demographically diverse sites, intentional enrollment of primary caregivers of children both with and without invasive diagnostic testing, and use of LLM based analyses.