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Clinical Care Trajectory Assessment of Children With Congenital Diaphragmatic Hernia and Neurodevelopmental
Alexandra Dimmer1, Gabriel Altit2, Sabrina Beauseigle1
1Harvey E. Beardmore Division of Pediatric Surgery, Department of Pediatric Surgery, Montreal Children's Hospital, McGill University Health Centre, McGill University, Montreal, Quebec, Canada.
Insights
Children with congenital diaphragmatic hernia (CDH) and neurodevelopmental impairment (NDI) need more support, especially in early childhood. Families are satisfied with resources but want better communication and peer support.
Area of Science:
- Pediatric Health
- Longitudinal Health Surveillance
- Multisystem Morbidity
Background:
- Congenital diaphragmatic hernia (CDH) can cause multisystem morbidity, often requiring long-term health surveillance.
- Neurodevelopmental impairment (NDI) is a common comorbidity in CDH patients.
- The impact of CDH-related morbidities on patients and families remains understudied.
Purpose of the Study:
- To describe the clinical trajectory of CDH patients with NDI (CDH-NDI).
- To explore the lived experiences of families with CDH-NDI.
- To assess family satisfaction with existing support resources for CDH-NDI.
Main Methods:
- A multi-phase explanatory study involving clinical data review and family satisfaction assessment.
- Phase 1: Retrospective analysis of clinical data from 91 CDH-NDI patients.
- Phase 2: Survey of CDH-NDI families regarding satisfaction with hospital resources.
Main Results:
- Patients with severe NDI experienced significantly longer ventilation, ICU, and hospital stays.
- The severe NDI cohort required more unscheduled visits, particularly within the first four years of life.
- Families reported high satisfaction with resources but desired improved team communication and peer support.
Conclusions:
- CDH-NDI patients require enhanced support, with a critical need during the first four years of life.
- Improving inter-team communication during patient transfers is essential.
- Facilitating opportunities for families to connect with others facing similar challenges is a key priority.
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).
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