Division of Newborn Medicine, Department of Pediatrics, The Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Department of Geriatrics and Palliative Medicine, The Icahn School of Medicine at Mount Sinai, New York, New York, USA.
J Palliat Med. 2022 Nov;25(11):1655-1660. doi: 10.1089/jpm.2022.0033. Epub 2022 Apr 29.
One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. We sought to define neonatal serious illness as a foundational concept for neonatal palliative care. Survey study. Practitioners in the United States with expertise in neonatal serious illness. Participants ranked 15 components according to how important each would be to include in a conceptual definition of neonatal serious illness. Based on rankings and free text responses, a working definition was created and a follow-up survey was circulated. Participants then ranked the extent to which the proposed definition comprehensively defines neonatal serious illness. The definition was further refined based on responses to the second survey. Eighty experts responded to our first survey. Definition components ranked as most important included "high risk of short term mortality" and "results in shortened lifespan." Analysis of free text responses revealed additional components viewed as important. We developed the following conceptual definition: "Neonatal serious illness 1) carries a high risk of short term mortality OR lifelong medical complexity with probable shortened lifespan, 2) may involve substantial prognostic uncertainty (especially in regard to neurodevelopment) that complicates medical decision-making, and 3) significantly impacts the patient and family's life now or in the future with strain related to treatments and care." We believe our definition of neonatal serious illness will facilitate future study essential to the advancement of care for this population.
开展严格的新生儿姑息治疗研究的一个主要挑战是，缺乏对儿科和新生儿姑息治疗核心概念的强有力的普遍共识定义。我们试图将新生儿严重疾病定义为新生儿姑息治疗的基础概念。调查研究。美国具有新生儿严重疾病专业知识的从业者。参与者根据每个组成部分对新生儿严重疾病概念定义的重要程度进行排名。根据排名和自由文本回复，创建了一个工作定义，并发布了后续调查。然后，参与者根据提出的定义对新生儿严重疾病的全面定义程度进行排名。根据对第二次调查的回应，对定义进行了进一步细化。80 名专家回应了我们的第一次调查。排名最高的定义组成部分包括“短期死亡率高风险”和“导致寿命缩短”。对自由文本回复的分析揭示了被认为重要的其他组成部分。我们制定了以下概念定义：“新生儿严重疾病 1）短期死亡率高风险或终生存在医疗复杂性，可能寿命缩短，2）可能涉及严重的预后不确定性（特别是在神经发育方面），使医疗决策复杂化，3）对患者和家庭现在或未来的生活产生重大影响，与治疗和护理相关的压力。”我们相信，我们对新生儿严重疾病的定义将有助于未来的研究，这对于推进该人群的护理至关重要。
