Parent and Physician Understanding of Prognosis in Hospitalized Children With Advanced Heart Disease.
Parent and Physician Understanding of Prognosis in Hospitalized Children With Advanced Heart Disease.
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DOI：
10.1161/jaha.120.018488
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发表时间：
2021-01-19
影响因子：
5.4
通讯作者：
Blume ED
中科院分区：
文献类型：
--
作者：
Morell E;Miller MK;Lu M;Friedman KG;Breitbart RE;Reichman JR;McDermott J;Sleeper LA;Blume ED
儿科晚期心脏病的不可预测的发展轨迹使得医生难以做出准确的判断，并对家庭做出明智的决策具有挑战性。本研究评估了父母和医生对晚期心脏病住院儿童的疾病负担和预后的理解。对住院≥7天的30天至19岁晚期心脏病患者的父母和医生进行了为期1年的纵向调查研究（n=160对）。使用一致性百分比和加权Kappa统计量评估一致性。中位患者年龄为1岁（四分位距，1-5岁），39%患有单心室病变，37%在心脏重症监护室。虽然92%的父母报告说他们对孩子的预后理解“非常好”或“很好”，但28%的医生认为父母对预后的理解只有“一点点”，“有些”或“根本不了解”。更好的父母报告的预后理解与更好地为孩子的医疗问题做好准备相关（比值比，4.7; 95% CI，1.4-21.7，P=0.02）。在评估功能等级、症状负担以及体力活动和学习/行为受限的可能性方面，家长与医生的一致性较差;平均而言，家长更乐观。许多父母（47%），但很少有医生（6%）希望孩子有正常的预期寿命。父母和医生照顾患有晚期心脏病的儿童在预后和疾病负担方面的观点不同。医生倾向于低估父母报告的症状负担程度。父母不太可能期望身体活动，学习/行为和预期寿命的限制。涉及患者报告结局、家长教育和医生沟通工具的综合干预可能是有益的。
The unpredictable trajectory of pediatric advanced heart disease makes prognostication difficult for physicians and informed decision‐making challenging for families. This study evaluated parent and physician understanding of disease burden and prognosis in hospitalized children with advanced heart disease. A longitudinal survey study of parents and physicians caring for patients with advanced heart disease age 30 days to 19 years admitted for ≥7 days was performed over a 1‐year period (n=160 pairs). Percentage agreement and weighted kappa statistics were used to assess agreement. Median patient age was 1 year (interquartile range, 1–5), 39% had single‐ventricle lesions, and 37% were in the cardiac intensive care unit. Although 92% of parents reported understanding their child's prognosis “extremely well” or “well,” 28% of physicians thought parents understood the prognosis only “a little,” “somewhat,” or “not at all.” Better parent‐reported prognostic understanding was associated with greater preparedness for their child's medical problems (odds ratio, 4.7; 95% CI, 1.4–21.7, P=0.02). There was poor parent–physician agreement in assessing functional class, symptom burden, and likelihood of limitations in physical activity and learning/behavior; on average, parents were more optimistic. Many parents (47%) but few physicians (6%) expected the child to have normal life expectancy. Parents and physicians caring for children with advanced heart disease differed in their perspectives regarding prognosis and disease burden. Physicians tended to underestimate the degree of parent‐reported symptom burden. Parents were less likely to expect limitations in physical activity, learning/behavior, and life expectancy. Combined interventions involving patient‐reported outcomes, parent education, and physician communication tools may be beneficial.