Clinical Care Trajectory Assessment of Children With Congenital Diaphragmatic Hernia and Neurodevelopmental Impairment
Bibliographic record
Abstract
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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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".