Jacob P Leisawitz, Sandra F Georges, Alyssa M Field, Saman Asghar, Gabrielle Foox, Andrew J Watrous, Howard L Weiner, Anne E Anderson, Liberty S Hamilton
Despite high prevalence of neuropsychological comorbidities among participants, our evidence suggests that these participants contribute meaningfully to studies investigating important developmental questions. We suggest strategies for tailoring task-based research to accommodate the unique needs of individuals in this population. Such practices are important for ensuring that research studies reflect the true diversity of the population.
BACKGROUND: Pediatric epilepsy patients undergoing stereo-electroencephalography (sEEG) for ictal onset evaluation provide a rare window to study the developing brain. While methodological frameworks for task-based sEEG research are well-established in adults, pediatric-specific guidance remains underdeveloped. Furthermore, many pediatric epilepsy patients have comorbidities that might typically exclude them from participating in research. We examine factors that influence research participation and discuss considerations for conducting sEEG research in children.
METHODS: Here, we present a retrospective analysis of task-based research participation patterns from an NIH-funded study of speech and language representations in 66 patients ages 4-24 years undergoing sEEG monitoring at Texas Children's Hospital to determine whether specific comorbidities influenced research participation.
RESULTS: Eighty-nine percent (n = 66) of patients approached for consent agreed to participate in the study. Despite high rates of comorbidities including neurocognitive disorder (66.67%), language delay (31.75%), global developmental delay (23.81%), mood disorders (33.33%), attention-deficit hyperactivity disorder (46.03%), autism spectrum disorder (14.29%), or other cognitive/intellectual disabilities (36.51%), all participants engaged in at least one task. While the majority of these diagnoses did not appear to influence subject participation, global developmental delay was associated with a significant reduction in time spent on active tasks.
CONCLUSIONS: Despite high prevalence of neuropsychological comorbidities among participants, our evidence suggests that these participants contribute meaningfully to studies investigating important developmental questions. We suggest strategies for tailoring task-based research to accommodate the unique needs of individuals in this population. Such practices are important for ensuring that research studies reflect the true diversity of the population.