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Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions
Sarah M Bernstein1, Mary C Barks2, Peter A Ubel3
1University of Utah School of Medicine, Salt Lake City, UT; Duke University Medical Center, Durham, NC.
The Journal of Pediatrics
|August 23, 2023
Summary
Prognostic discordance between parents and physicians is common in infants with neurologic conditions, often stemming from differences in understanding. This highlights a need for improved communication strategies regarding infant prognosis.
Area of Science:
- Pediatric Neurology
- Clinical Communication
- Medical Prognosis
Background:
- Prognostic communication is crucial for families of infants with neurologic conditions.
- Understanding discrepancies in parental and physician expectations is vital for effective care planning.
Purpose of the Study:
- To assess the frequency, severity, and nature of prognostic discordance between parents and physicians for infants with neurologic conditions.
- To identify whether discordance arises from differences in understanding or belief.
Main Methods:
- An observational cohort study involving 40 parent-physician dyads of infants with neurologic conditions.
- Postconference surveys assessed expected neurologic outcomes (motor, speech, cognition) on a 6-point scale.
- Prognostic discordance was defined as a difference of ≥2 response options.
Main Results:
- Seventy percent (28/40) of dyads showed prognostic discordance in at least one domain.
- Discordance was predominantly moderate (82%) and equally frequent across motor, speech, and cognitive domains.
- Differences in understanding (89%) were more common than differences in belief (21%), with parents generally being more optimistic.
Conclusions:
- Significant prognostic discordance exists between parents and physicians for infants with neurologic conditions.
- This discordance is often rooted in differing understandings and, to a lesser extent, beliefs.
- Findings support the development of interventions to enhance prognostic communication and align expectations.
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