Parental choice in the changing landscape of trisomy 18 medical interventions: How to navigate misconceptions about survival outcomes in the prenatal consult
Friday, September 20, 2024
8:45 AM – 9:45 AM CT
Location: Regency Ballroom B (First Floor)
Abstract: Trisomy 18 is a rare genetic condition characterized by growth restriction, birth defects, and severe intellectual disability. Survival outcomes for these patients are heterogenous and influenced by the type and degree of congenital anomalies. At many centers across the country, medical teams are offering, and families are pursuing, medical interventions for these infants with greater frequency. These include increasingly complex surgeries and supportive technologies such as tracheostomy with home mechanical ventilation.
Due to the high mortality rate approaching 90% at one year, families may choose between comfort care to allow natural death or intensive therapy provided at birth. Surviving children can have a life expectancy exceeding 10 years; these patients historically represent a group with fewer/less severe birth defects and less complex medical needs. How survival outcomes for this population are impacted by individual decisions to offer/not offer aggressive medical interventions by clinicians and to pursue/forego these interventions by parents remains unclear.
In this session, we will discuss how families facing goals-of-care decisions for these patients may misunderstand population data, believing that reaching the one-year mark will guarantee long-term survival. This misconception may lead parents to pursue treatments that cannot achieve this desired outcome due to their child’s individual prognosis. We will engage the audience and propose practical strategies to present individualized prognostic information and help parents comprehend that while patients with favorable individual factors with likely survival to one year are likely to also survive longer, this outcome is unlikely to be achieved, despite aggressive therapy in most cases.
Learning Objectives:
After participating in this conference, attendees should be able to:
Understand how the population data for long-term survival in trisomy 18 is impacted by individual patient decisions and challenging to use to prognosticate for specific patients.
Describe how poor health literacy and numeracy can lead parents presented with survival outcomes to conflate the ability to support a child to one year and assured decade-long survival.
Identify strategies to communicate prognostic information that can support values-based decisions around achievable goals for this population.
Stephanie Kukora – Children's Mercy Kansas City; Rose M. Doolittle, MD – Neonatologist, Pediatrics, OU Healthcare/Oklahoma Children's Hospital
