Abstracts

Rationale: Pediatric epilepsy patients undergoing intracranial electroencephalography (iEEG) for ictal onset evaluation provide a rare window into the physiological patterns/networks in developing brain. Many of these individuals present cognitive, behavioral, and linguistic challenges that pose potential barriers to participation in testing paradigms. While methodological frameworks for task-based iEEG research are well-established in adults, pediatric-specific guidance remains underdeveloped. In this study, we evaluated real-world consent and participation patterns in pediatric iEEG research into speech and language development in the brain. We also identified practical strategies to effectively maximize data quality and participant engagement in this patient population.

Methods: We conducted a retrospective analysis of 47 pediatric patients (ages 4-22) recruited during inpatient iEEG evaluation at Texas Children’s Hospital for an NIH-funded study investigating speech and language. We reviewed best practices for obtaining consent, optimal post-operative day (POD) to approach the patient/family for consent and testing, multiple testing epochs, and developmentally appropriate testing paradigms including computer games and short video-based stimuli. Recruitment was coordinated with the clinical team. We analyzed rates of consent, optimal POD for testing, number of testing sessions, and prevalence of neurodevelopmental and psychiatric comorbidities that could affect research participation.

Results: Of 47 eligible patients approached, 85% (n=40) consented to participate; only 6 (13%) declined, and 1 participated during two separate admissions. On average, we approached patients for consent on POD3 and began obtaining data on POD4. We completed an average of 2.3 data sessions across patients. Among those who consented, 35% had mood disorders, 55% had language delay, and 80% had at least one significant neurodevelopmental or psychiatric comorbidity. Despite these challenges, nearly all participants engaged in the research tasks, yielding high quality data that have been used in our analyses.

Conclusions: This study highlights practical, evidence-based strategies for successfully recruiting and engaging pediatric epilepsy iEEG patients in research. Through flexible task design, integration of developmentally appropriate stimuli, and collaboration with clinical teams, we were able to obtain valuable data from a cohort in which cognitive and behavioral challenges are common. As iEEG research expands in pediatric populations, ensuring broad and inclusive participation will be essential for scientific validity and generalizability. Our findings show that, even among patients with significant neurodevelopmental and psychiatric comorbidities, more than 80% were able to meaningfully engage in our protocols. These results demonstrate the importance of strategic practices that cater to the unique needs of this population and, broadly, inform efforts to expand the developmental scope of intracranial research.

Funding: NIH R01018579 (PI: Hamilton)