This clinical report provides an updated evidence-based set of recommendations for the long-term follow-up of patients with congenital diaphragmatic hernia (CDH) after discharge from initial hospitalization. Since the last American Academy of Pediatrics report was published over 15 years ago, there have been significant advances in our understanding of the manifestations, diagnostic and surveillance approaches, and therapies for the cardiopulmonary, neurodevelopmental, gastrointestinal/nutritional, and surgical adverse outcomes that are commonly encountered in patients with CDH. Consideration is also given to patient and caregiver quality of life, which has been a relatively overlooked component of this disease in previous CDH guidance. Because CDH severity and the prevalence of adverse outcomes are not only variable but also change with patient age, differential guidance is provided based on low-risk and high-risk status and are presented in a timeline format. Providers may use the guidance in this clinical report to develop an individualized long-term plan that balances care with available resources to support quality of life through the lifespan.
Jancelewicz et al. (Mon,) studied this question.