Prowadzenie badań opartych na zadaniach u dzieci z padaczką wymagającą operacji - perspektywy i wyzwania
Perspectives in conducting task-based research in pediatric surgical epilepsy patients
W skrócie
[Preprint - wstępne wyniki] Badanie wykazało, że 89% dzieci z padaczką, u których stosuje się zaawansowaną metodę monitorowania mózgu (sEEG), chętnie uczestniczy w badaniach naukowych, mimo że wiele z nich ma dodatkowe problemy zdrowotne, takie jak zaburzenia rozwojowe, zaburzenia nastroju czy autyzm. Choć dzieci z opóźnieniem rozwojowym spędzały mniej czasu na wykonywaniu zadań badawczych, wszyscy uczestnicy byli w stanie wziąć udział w przynajmniej jednym zadaniu. Wyniki sugerują, że dzieci z padaczką i problemami towarzyszącymi mogą wnieść znaczący wkład w badania naukowe, jeśli dostosuje się metodykę badań do ich indywidualnych potrzeb.
Oryginalny abstract (angielski)
Objective: 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 (1R01DC018579) in 66 patients (ages 4-24) 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%), ADHD (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. Discussion: 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.