Department of Pediatrics, Duke University School of Medicine, Durham, NC, USA.
Department of Population Health Sciences, Duke University School of Medicine, Durham, NC, USA.
Ann Neurol. 2022 Oct;92(4):699-709. doi: 10.1002/ana.26457. Epub 2022 Aug 20.
We characterize the content and role of prognostic discussion for infants with neurologic conditions.
In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes.
Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty.
In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.
我们描述神经疾病患儿预后讨论的内容和作用。
在这项描述性定性研究中，我们前瞻性地招募了预计将有≥1 次关于预后或治疗目标的家庭会议的重症监护病房中患有神经疾病的年龄<1 岁的婴儿。我们在家庭会议进行时对其进行录音。我们使用快速循环定性方法来识别和提炼主题。
共纳入 40 名婴儿和 61 名家长，24 名婴儿进行了 68 次家庭会议。大多数婴儿病例（n=23/24，96%）和会议（n=64/68，94%）都讨论了神经预后。常见的婴儿诊断包括早产（n=12，52%）、遗传疾病（n=9，35%）和脑畸形（n=7，30%）。我们确定了与婴儿预后特征相关的 2 个主题：（1）损伤预测；（2）预后预测的原理。我们确定了 3 个与预后讨论作用相关的主题：（1）使父母和临床医生对婴儿结局的理解保持一致；（2）影响决策；（3）为家庭生活做好准备。我们确定了 2 个与预后不确定性讨论相关的主题：（1）不确定性的多层次类型；（2）在不确定性中保持希望的空间。
在本队列中患有神经疾病的婴儿及其家长中，我们确定了描述神经结局讨论内容和作用的重要主题。我们的研究结果表明，预后讨论侧重于预期的损伤，为决策提供信息，并帮助家庭为家庭生活做好准备。未来的工作应描述这些发现是否与家长对预后披露的偏好一致。
