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. 2023 Aug 1;24(8):e372-e381.
doi: 10.1097/PCC.0000000000003249. Epub 2023 Apr 26.

Long-Term Functional Outcomes at 1-Year After Hospital Discharge in Critically Ill Neonates With Congenital Diaphragmatic Hernia

Jill E O'Hara  1   2   3   4   5   6   7   8 , Terry L Buchmiller  1   4 , Lori J Bechard  1   2 , Alireza Akhondi-Asl  1   2 , Gary Visner  1   5 , Catherine Sheils  1   5 , Ronald Becker  1   6 , Mollie Studley  7 , Lindsay Lemire  4 , Mary P Mullen  1   8 , Sally Vitali  1   2   3   4   5   6   7   8 , Nilesh M Mehta  1   2   3   4   5   6   7   8 , Belinda Dickie  1   2   4 , Jill M Zalieckas  1   2   3   4 , Ben D Albert  1   2   3   4   5   6   7   8
Affiliations

Long-Term Functional Outcomes at 1-Year After Hospital Discharge in Critically Ill Neonates With Congenital Diaphragmatic Hernia

Jill E O'Hara et al. Pediatr Crit Care Med. .

Abstract

Objectives: Congenital diaphragmatic hernia (CDH) is a birth defect associated with long-term morbidity. Our objective was to examine longitudinal change in Functional Status Scale (FSS) after hospital discharge in CDH survivors.

Design: Single-center retrospective cohort study.

Setting: Center for comprehensive CDH management at a quaternary, free-standing children's hospital.

Patients: Infants with Bochdalek CDH were admitted to the ICU between January 2009 and December 2019 and survived until hospital discharge.

Interventions: None.

Measurements and main results: One hundred forty-two infants (58% male, mean birth weight 3.08 kg, 80% left-sided defects) met inclusion criteria. Relevant clinical data were extracted from the medical record to calculate FSS (primary outcome) at hospital discharge and three subsequent outpatient follow-up time points. The median (interquartile range [IQR]) FSS score at hospital discharge was 8.0 (7.0-9.0); 39 patients (27.5%) had at least moderate impairment (FSS ≥ 9). Median (IQR) FSS at 0- to 6-month ( n = 141), 6- to 12-month ( n = 141), and over 12-month ( n = 140) follow-up visits were 7.0 (7.0-8.0), 7.0 (6.0-8.0), and 6.0 (6.0-7.0), respectively. Twenty-one patients (15%) had at least moderate impairment at over 12-month follow-up; median composite FSS scores in the over 12-month time point decreased by 2.0 points from hospital discharge. Median feeding domain scores improved by 1.0 (1.0-2.0), whereas other domain scores remained without impairment. Multivariable analysis demonstrated right-sided, C- or D-size defects, extracorporeal membrane oxygenation use, cardiopulmonary resuscitation, and chromosomal anomalies were associated with impairment.

Conclusions: The majority of CDH survivors at our center had mild functional status impairment (FSS ≤ 8) at discharge and 1-year follow-up; however, nearly 15% of patients had moderate impairment during this time period. The feeding domain had the highest level of functional impairment. We observed unchanged or improving functional status longitudinally over 1-year follow-up after hospital discharge. Longitudinal outcomes will guide interdisciplinary management strategies in CDH survivors.

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Conflict of interest statement

Dr. Bechard’s institution received funding from the Academy of Nutrition and Dietetics, Pediatric Nutrition Practice Group. Dr. Mullen received funding from Altavant Sciences—Pediatric Pulmonary Hypertension Advisory Board and UpToDate. Dr. Mehta’s institution received funding from McGraw-Hill and Wolters Kluwer. The remaining authors have disclosed that they do not have any potential conflicts of interest.

References

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