WIP 150 - Prognostic Accuracy and Decision-Making when Counseling Families with Fetal Diagnosis of Renal Agenesis in a High-Risk Delivery Center

Poster Number: WIP 150
Publication Number: WIP 150.2552

Background: Fetal renal agenesis and resultant pulmonary hypoplasia remains a serious prognosis. Bilateral renal agenesis is lethal without complex long-term medical therapies; unilateral renal agenesis has a higher survival, but some patients do not survive or have considerable morbidity, particularly if patients have a comorbid condition affecting the other kidney. In these situations, options for intensive care, trial of therapy, or comfort measures may be offered at delivery. Accurate prognostication supports decision-making that aligns with parents’ values, but this is challenging with the considerable uncertainty and limited epidemiologic data in this population.

Objective: This study aims to evaluate the impact of prenatal counseling families receive regarding their fetus’ diagnosis of unilateral or bilateral renal agenesis on survival at 1 year of age. We will also identify confounding factors that contribute to neonatal outcomes to help guide providers’ counseling strategies.

Design/Methods: We are conducting a retrospective chart review of cases of antenatally diagnosed renal agenesis born at a high-risk delivery center with a Level IV NICU, between 2010 and 2023. In this data set, the mortality rate in the neonatal period for neonates with bilateral renal agenesis is 76.5%. The mortality rate in the neonatal period for unilateral agenesis is 17.5%. We will abstract data from the CHNC database from our center regarding the diagnosis, co-morbidities, interventions provided, and survival outcomes. We will compare this to medical record for documentation of prenatal consultation, qualitatively categorizing the prognosis as: survival anticipated; unknown, survival likely; survival unknown; unknown, survival unlikely; or survival not anticipated. We will also analyze which characteristics are statistically significantly associated with mortality using univariate and multivariate analysis, as well as likelihood ratios of survival across the prognostic categories. All data will be collected by 1/1/2024 and the project will be complete by 3/1/2024.