Highlights
- Discussing brain MRI results for neonates with HIE are challenging tasks for clinicians and daunting moments for parents.
- Clinicians reported uncertainty, lack of confidence, and limitations, when discussing brain MRI results in the context of HIE and TH.
- For parents, most important themes were communication skills, stress, hope, and pressing need to receive answers.
- There is an urgent need to develop a systemic and interdisciplinary approach to prognostication.
- There is an urgent need to standardize reporting of brain MRI results.
- There is an urgent need to further train clinicians how to properly discuss these MRI results with parents.
- These solutions may help facilitate difficult decision-making discussions and make these discussions more meaningful for parents.
Abstract
Context
Clinicians use brain magnetic resonance imaging (MRI) to discuss neurodevelopmental prognosis with parents of neonates with hypoxic-ischemic encephalopathy (HIE) treated with therapeutic hypothermia (TH).
Purpose
To investigate how clinicians and parents discuss these MRI results in the context of HIE and TH and how these discussions could be facilitated and more meaningful for parents.
Procedures
Mixed-methods surveys with open-ended and closed-ended questions were completed by two independent groups. (1) Clinicians responded to clinical vignettes of neonates with HIE treated with TH with various types of clinical features, evolution and extent of brain injury and questions about how they discuss brain MRI results in this context. (2) Parents of children with HIE treated with TH responded to questions about the discussion of MRI that they had while still in the neonatal intensive care unit and were asked to place it in perspective with the outcomes of their child when he/she reached at least 2 years of age. Open-ended responses were analyzed using a thematic analysis approach. Closed-ended responses are presented descriptively.
Results
Clinicians reported uncertainty, lack of confidence, and limitations when discussing brain MRI results in the context of HIE and TH. Brain MRI results were “usually” (53%) used in the prognostication discussion. When dealing with day-2 brain MRIs performed during TH, most clinicians (40%) assumed that the results of these early MRIs were only “sometimes” accurate and only used them “sometimes” (33%) to discuss prognosis; a majority of them (66%) would “always” repeat imaging at a later time-point to discuss prognosis. Parents also struggled with this uncertainty, but did not discuss limitations of MRI as often. Parents raised the importance of the setting where the discussion took place and the importance to inform them as quickly as possible. Clinicians identified strategies to improve these discussions, including interdisciplinary approach, formal training, and standardized approach to report brain MRI. Parents highlighted the importance of communication skills, the stress, the hope surrounding their situation, and the need to receive answers as soon as possible. The importance of showing the pictures or making representative drawing of the injury, but also highlighting the not-injured brain, was also highlighted by parents.
Conclusions
Discussing brain MRI results for neonates with HIE treated with TH are challenging tasks for clinicians and daunting moments for parents.
Keywords: Birth asphyxia, brain, clinician, magnetic resonance imaging, neonate, parents, neonatal encephalopathy, hypothermia, context