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Tragesser CJ, Hafezi N, Kitsis M, et al. Survivors of congenital diaphragmatic hernia repair face barriers to long-term follow-up care. J Surg Res. 2021;267:243-250doi: 10.1016/j.jss.2021.05.022.
Tragesser, C. J., Hafezi, N., Kitsis, M., Markel, T. A., & Gray, B. W. (2021). Survivors of congenital diaphragmatic hernia repair face barriers to long-term follow-up care. The Journal of surgical research, 267243-250. https://doi.org/10.1016/j.jss.2021.05.022
Tragesser, Cody J, et al. "Survivors of congenital diaphragmatic hernia repair face barriers to long-term follow-up care." The Journal of surgical research vol. 267 (2021): 243-250. doi: https://doi.org/10.1016/j.jss.2021.05.022
Tragesser CJ, Hafezi N, Kitsis M, Markel TA, Gray BW. Survivors of congenital diaphragmatic hernia repair face barriers to long-term follow-up care. J Surg Res. 2021 Jun 22;267:243-250. doi: 10.1016/j.jss.2021.05.022. Epub 2021 Jun 22. PMID: 34171561.
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J Surg Res. 2021 Jun 22;267:243-250. doi: 10.1016/j.jss.2021.05.022. Epub 2021 Jun 22.

Survivors of congenital diaphragmatic hernia repair face barriers to long-term follow-up care.

The Journal of surgical research

Cody J Tragesser, Niloufar Hafezi, Michelle Kitsis, Troy A Markel, Brian W Gray

Affiliations

  1. Indiana University School of Medicine, Indianapolis, Indiana.
  2. Indiana University School of Medicine, Department of Surgery, Division of Pediatric Surgery, Riley Hospital for Children, Indianapolis, Indiana.
  3. University of Illinois At Chicago Metropolitan Group Hospitals, Department of Surgery, Chicago, Illinois.
  4. Indiana University School of Medicine, Department of Surgery, Division of Pediatric Surgery, Riley Hospital for Children, Indianapolis, Indiana. Electronic address: [email protected].

PMID: 34171561 DOI: 10.1016/j.jss.2021.05.022

Abstract

BACKGROUND: Congenital diaphragmatic hernia (CDH) carries high morbidity and mortality, and survivors commonly have neurodevelopmental, gastrointestinal, and pulmonary sequela requiring multidisciplinary care well beyond repair. We predict that following hospitalization for repair, CDH survivors face many barriers to receiving future medical care.

METHODS: A retrospective review was conducted of all living CDH patients between ages 0 to 12 years who underwent repair at Riley Hospital for Children (RHC) from 2010 through 2019. Follow-up status with specialty providers was reviewed, and all eligible families were contacted to complete a survey regarding various aspects of their child's care, including functional status, quality of life, and barriers to care. Bivariate analysis was applied to patient data (P < 0.05 was significant) and survey responses were analyzed qualitatively.

RESULTS: After exclusions, 70 survivors were contacted. Thirty-three (47%) were deemed lost to follow up to specialist providers, and were similar to those who maintained follow-up with respect to defect severity type (A-D, P = 0.57), ECMO use (P = 0.35), number of affected organ systems (P = 0.36), and number of providers following after discharge (P = 0.33). Seventeen (24%) families completed the survey, of whom eight (47%) were deemed lost to follow up to specialist providers. Families reported distance and time constraints, access to CDH-specific information and care, access to CDH-specific resources, and access to healthcare as significant barriers to care. All respondents were interested in a multidisciplinary CDH clinic.

CONCLUSIONS: CDH survivors require multidisciplinary care beyond initial repair, but attrition to follow-up after discharge is high. A multidisciplinary CDH clinic may address caregivers' perceived barriers.

Copyright © 2021. Published by Elsevier Inc.

Keywords: Access to healthcare; Aftercare; Congenital diaphragmatic hernia; Multidisciplinary clinic

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