046 - Comparing Parental and Pediatric Neurologist Experiences and Expectations Following Therapeutic Hypothermia in the NICU

Publication Number: 46.4411

Megan Garcia-Curran, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Priya Purushothaman, Hassenfeld Children's Hospital at NYU Langone, New York, NY, United States; Talia Shear, Ann and Robert H Lurie Childrens Hospital, Chicago, IL, United States; Kristina Thompsen, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Natalia Henner, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Laura E. Vernon, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Martha Finch, Northwestern University The Feinberg School of Medicine, Chicago, IL, United States

Background: Hypoxic-ischemic encephalopathy (HIE) necessitates discussions of neurologic prognosis by neonatologists and neurologists in the neonatal intensive care unit (NICU). While therapeutic hypothermia (TH) has improved outcomes, infants with HIE continue to have a wide range of disease sequelae. Prognostication is multi-factorial and challenging, and families often receive the information under immense stress. While there is robust literature regarding prognostic discussions and parental perspectives within the realm of neonatology, our study aims to expand this within child neurology.

Objective: Examine factors that influence prognostic understanding for families and neurologists, highlighting variation in perceived prognosis, and describe how prognostic perceptions correlate with disease severity.

Design/Methods: We approached families of infants who underwent TH for HIE in the NICU at Lurie Children’s Hospital and Prentice Women’s Hospital between July 2020 and May 2023. Consenting families and neurologists received surveys following MRI disclosure (T1), at discharge (T2) and at outpatient follow up (T3). Surveys investigated perception of prognosis and communication. Objective data was collected through retrospective chart review.

Results: 35 families consented. Of these, 19, eight, and three families completed surveys at T1, T2, and T3, respectively. Physicians completed surveys for 33 infants at T1, eight at T2, and five at T3. Of the fifteen infants for whom both physicians and families completed surveys, none were reliant on medical equipment at discharge or died.

Data from T1 dyads are presented (n=15). Many parents recalled discussions of specific long-term outcomes more often than their neurologist counterparts (e.g., breathing, quality of life; Fig 1), which could reflect NICU team conversations. The experiences and clinical measurements affecting parent and neurologist feelings about prognosis often differed (Fig 2A), with more factors contributing to families feeling more reassured than neurologists (Fig 2B).

Conclusion(s): Due to the acute, unexpected onset of HIE and urgent nature of initiating TH, conversations regarding treatment and prognosis are conducted by several multidisciplinary team members. This study demonstrates the most salient components of prognostic conversations vary amongst families and neurologists. We intend to expand this project to infants with a wider range of clinical outcomes and to perform a qualitative analysis of differences in parent/neurologist responses regarding long term outcomes.

Parental and Neurologist Recall of Discussions Regarding Long-Term Sequelae of Hypoxic-Ischemic Encephalopathy (HIE)
There was variation between parental and neurologist recall of different long-term outcomes following HIE (0 = do not recall discussion, 1= recall discussion; Fig 1A is mean of responses, n=15). Differences existed within each neurologist-parent dyad with respect to which topics were recalled (Fig 1B, mean of [Parent response – Neurologist response], positive when only parent recalled, negative when only neurologist recalled)

Factors Affecting Parents’ and Neurologists’ Expected Long-Term Prognosis
Parents and neurologists were asked if each topic impacts their feelings regarding long term prognosis of the infant, with options of “Yes”, “No”, “Don’t Know” or “Does not apply.” Fig 2A reveals that there is variation between the two parents and neurologist responses (Yes=1, No=0, mean of respondents [n=15]; figure excludes “don’t know” or “does not apply”). Fig 2B demonstrates that, when asked whether each factor makes respondents feel better or worse, many factors help families feel more positively about long-term prognosis of the child compared with neurologists or may have had a more negative impact on neurologists' expectations (1= “Better”, 0= “I Don’t Know”, -1= “Worse”; figure excludes “Does Not Apply.” Data presented as calculated mean of [Parent response – neurologist response] within each dyad).