Department of Cardiology, Boston Children's Hospital, 300 Longwood Avenue, Boston, MA, 02115, USA.
Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
Pediatr Cardiol. 2022 Dec;43(8):1822-1831. doi: 10.1007/s00246-022-02919-8. Epub 2022 May 3.
There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this child died within the next year?"-to predict one-year mortality in children with AHD and assess its utility as entry criteria for future trials. This is a prospective cohort study of physicians and nurses caring for children (1 month-19 years) with AHD hospitalized ≥ 7 days. AHD was defined as single ventricle physiology, pulmonary vein stenosis or pulmonary hypertension, or any cardiac diagnosis with signs of advanced disease. Primary physicians were asked the surprise question and medical record review was performed. Forty-nine physicians responded to the surprise question for 152 patients. Physicians responded "No, I would not be surprised if this patient died" for 54 (36%) patients, 20 (37%) of whom died within 1 year, predicting one-year mortality with 77% sensitivity, 73% specificity, 37% positive predictive value, and 94% negative predictive value. Patients who received a "No" response had an increased 1-year risk of death (hazard ratio 7.25, p < 0.001). Physician years of experience, subspecialty, and self-rated competency were not associated with the accuracy of the surprise question. The surprise question offers promise as a bedside screening tool to identify children with AHD at high risk for mortality and help physicians identify patients who may benefit from palliative care and advance care planning discussions.
在描述预后和缺乏可靠的进入标准方面，患有晚期心脏病（AHD）的儿童的姑息治疗研究存在很大的不确定性。本研究评估了“如果这个孩子在未来一年内死亡，你会感到惊讶吗？”这一意外问题，以预测患有 AHD 的儿童的一年死亡率，并评估其作为未来试验的进入标准的效用。这是一项对患有 AHD（1 个月至 19 岁）且住院时间≥7 天的医生和护士进行的前瞻性队列研究。AHD 的定义为单心室生理、肺静脉狭窄或肺动脉高压，或任何具有晚期疾病迹象的心脏诊断。主要医生被问到这个意外问题，并进行了病历审查。49 名医生对 152 名患者回答了意外问题。医生对 54 名（36%）患者回答“不，我不会对这个患者的死亡感到惊讶”，其中 20 名（37%）在 1 年内死亡，预测一年死亡率的敏感性为 77%，特异性为 73%，阳性预测值为 37%，阴性预测值为 94%。回答“否”的患者 1 年内死亡风险增加（危险比 7.25，p<0.001）。医生的工作年限、专业和自我评估能力与意外问题的准确性无关。意外问题作为一种床边筛查工具，有望识别出患有 AHD 的儿童中死亡率高的儿童，并帮助医生识别可能受益于姑息治疗和预先护理计划讨论的患者。
