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Observational Study
. 2023 Dec:263:113677.
doi: 10.1016/j.jpeds.2023.113677. Epub 2023 Aug 21.

Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions

Sarah M Bernstein  1 , Mary C Barks  2 , Peter A Ubel  3 , Kevin Weinfurt  3 , Margaret H Barlet  3 , Samantha Farley  2 , Megan G Jiao  2 , Simran Bansal  3 , Kimberley Fisher  3 , Monica E Lemmon  4
Affiliations
Observational Study

Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions

Sarah M Bernstein et al. J Pediatr. 2023 Dec.

Abstract

Objective: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions.

Study design: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm.

Results: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%).

Conclusions: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.

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Conflict of interest statement

Declaration of Competing Interest This work was funded by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health under award numbers K12NS098482 and K23NS116453. Role of Funder/Sponsor (if any): The National Institute of Neurological Disorders and Stroke of the National Institutes of Health under award numbers K12NS098482 and K23NS116453 had no role in the design and conduct of the study. The authors have no conflicts of interest to disclose. The authors have indicated they have no financial relationships relevant to this article to disclose.

Figures

Figure 1:
Figure 1:. Sources of prognostic discordance: Differences in understanding and differences in belief
Parents and physicians independently answered questions about the patient’s expected prognosis in response to questions like, “Will [your child/this patient] take steps on their own (without the help of assistive devices like braces or a wheelchair) by age 2?” Parents were then asked how they thought their doctor would answer the question, “Will [your child/this patient] take steps on their own (without the help of assistive devices like braces or a wheelchair) by age 2?” These sample responses highlight both a difference in belief and a difference in understanding between the physician and parent’s prognostic estimate of an infant’s outcome.
Figure 2:
Figure 2:
Histograms of paternal-physician and maternal-physician responses regarding infant prognosis across the motor, speech, and cognition domains
See this image and copyright information in PMC

Comment in

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