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The following is a summary of “Clinical Care Trajectory Assessment of Children with Congenital Diaphragmatic Hernia and Neurodevelopmental Impairment,” published in the September 2024 issue of Pediatrics by Dimmer et al.

Interdisciplinary long-term health surveillance plays a crucial role in identifying and mitigating multisystem morbidity associated with congenital diaphragmatic hernia (CDH), particularly in patients with neurodevelopmental impairment (NDI). Despite this, there is a paucity of research examining the impact of these morbidities on patients and their families. This study aims to elucidate the clinical trajectory of patients with CDH and NDI (CDH-NDI) and to assess family satisfaction with current support resources. 

Researchers conducted a multi-phase explanatory study (REB 2023-8964) comprising two phases: Phase 1 involved a comprehensive review of clinical data from patients with CDH-NDI attending a longitudinal follow-up clinic, while Phase 2 focused on evaluating family satisfaction with existing hospital resources. Statistical analyses were performed to evaluate the data from both phases. Out of 91 patients studied, 27 were identified with NDI, categorized into mild (n=2), moderate (n=7), and severe (n=18) impairment levels. Notably, patients in the severe NDI cohort experienced significantly longer durations of ventilation (16 days vs. 8 days; p<0.001), ICU stay (34 days vs. 18 days; p<0.001), and hospital admission (41 days vs. 22 days; p<0.001) compared to those with mild or moderate NDI. 

Additionally, the severe cohort required more unscheduled visits, particularly during the first four years of life (p<0.05). Despite high overall satisfaction with existing resources, families indicated a need for improved team communication during ICU-to-ward transfers and expressed a desire for opportunities to connect with other CDH families. These findings underscore the necessity for enhanced support structures for CDH children with NDI, with a particular focus on the initial years of life. While family satisfaction remains high, there is a clear need for improved communication and greater access to support resources.

Source: sciencedirect.com/science/article/pii/S002234682400808X