OBJECTIVE To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN Surveys were developed and administered to neonatologists and eligible families. Quantitative analysis was conducted using standard statistical methods. Qualitative analysis was conducted using NVivo software. Focus groups were conducted with the same groups, and audio recordings were obtained and analyzed for recurring themes. RESULTS Both parents and physicians value QOL as a metric for guiding care in the NICU. Parents were more likely to accept higher levels of disability, while neonatologists were more likely to accept higher levels of dependence on medical equipment. In relation to infant QOL, predominant themes expressed in the parent focus groups were stress levels in the NICU, advocating as parents, and the way in which long-term outcomes were presented by the medical team; in the physician focus group, the ambiguity of predicting outcomes and thus QOL was the main theme. CONCLUSIONS Both parents and physicians recognize the importance of QOL in the decision-making process for critically ill infants, but the two groups differ in their assessment of what QOL means in this context. These data suggest that QOL cannot be adequately defined for standardized use in a clinical context, and as such, should be used thoughtfully by neonatologists in discussions of end- of-life care.

中文翻译：

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“生活质量”：父母和新生儿学家的观点。

目的 评估医生和家属如何理解 NICU 患者的生活质量 (QOL)，并探讨制定 QOL 标准化定义的可行性。研究设计 对新生儿科医生和符合条件的家庭进行了调查和管理。使用标准统计方法进行定量分析。使用 NVivo 软件进行定性分析。焦点小组与相同的小组一起进行，并获得录音并分析反复出现的主题。结果 父母和医生都将 QOL 作为指导 NICU 护理的指标。父母更有可能接受更高程度的残疾，而新生儿科医生更有可能接受更高程度的对医疗设备的依赖。关于婴儿生活质量，家长焦点小组中表达的主要主题是新生儿重症监护室的压力水平、作为家长的倡导以及医疗团队呈现长期结果的方式；在医生焦点小组中，预测结果的模糊性和生活质量是主要主题。结论 父母和医生都认识到生活质量在危重婴儿决策过程中的重要性，但两组对生活质量在这种情况下意味着什么的评估存在差异。这些数据表明，QOL 无法充分定义为临床环境中的标准化使用，因此，新生儿科医生在讨论临终关怀时应慎重使用。预测结果的模糊性和生活质量是主题。结论 父母和医生都认识到生活质量在危重婴儿决策过程中的重要性，但两组对生活质量在这种情况下意味着什么的评估存在差异。这些数据表明，QOL 无法充分定义为临床环境中的标准化使用，因此，新生儿科医生在讨论临终关怀时应慎重使用。预测结果的模糊性和生活质量是主题。结论 父母和医生都认识到生活质量在危重婴儿决策过程中的重要性，但两组对生活质量在这种情况下意味着什么的评估存在差异。这些数据表明，QOL 无法充分定义为临床环境中的标准化使用，因此，新生儿科医生在讨论临终关怀时应慎重使用。