Clinical Care Trajectory Assessment of Children With Congenital Diaphragmatic Hernia and Neurodevelopmental Impairment.

Background: Interdisciplinary long-term health surveillance identifies opportunities to mitigate CDH-related multisystem morbidity, particularly in patients with neurodevelopmental impairment (NDI). However, no studies to date have assessed the impact of these morbidities on the patient/family. Our aim was to describe the clinical trajectory of patients with CDH and NDI (CDH-NDI), and to explore the lived experience and satisfaction of families with existing support resources.

Methods: A multi-phase explanatory study (REB 2023-8964) was conducted. Phase 1: Review of clinical data for CDH-NDI patients attending a longitudinal follow-up clinic; Phase 2: Satisfaction assessment of CDH-NDI families with existing hospital resources. Standard statistical analyses were performed for Phases 1 and 2, respectively.

Results: Of 91 patients included, 27 had NDI, stratified into mild (n = 2), moderate (n = 7), and severe (n = 18) cohorts. Ventilation (16 vs. 8; p < 0.001), ICU (34 vs. 18; p < 0.001) and hospital (41 vs. 22; p < 0.001) days were significantly longer in the severe cohort. The severe cohort required significantly more unscheduled visits, particularly in the first four years of life (p < 0.05). Despite high family satisfaction with existing resources, team communication during ICU-ward transfers could be improved. Parents also desired to share experiences with other CDH families.

Conclusion: CDH children with NDI require increased support, particularly in the first four years of life. While clinic satisfaction is high, improvement of team communication and access to support resources remain high priorities for parents.

Level of evidence: Level II (prospectively collected data, retrospective analysis).