University of Massachusetts Medical School, Worcester, MA.
Department of Cardiology, Boston Children's Hospital, Boston, MA; Department of Pediatrics, Harvard Medical School, Boston, MA.
J Pediatr. 2021 Nov;238:221-227.e1. doi: 10.1016/j.jpeds.2021.06.077. Epub 2021 Jul 2.
To characterize parent-reported symptom burden and effectiveness of symptom management in children hospitalized with advanced heart disease.
Prospective survey study of 161 parents whose child was admitted to a single institution with advanced heart disease between March 2018 and February 2019 using the Survey about Caring for Children with Heart Disease.
Of the 161 patients, 54% were under 2 years old with a diagnosis of single ventricle physiology (39%), pulmonary hypertension (12%), and other congenital heart disease (28%). Over one-half (56%) of parents reported that their child was experiencing a high degree ("a great deal"/"a lot") of symptoms. The most frequently reported symptoms were pain (68%), fatigue (63%), and breathing difficulties (60%). Of the symptoms that were treated, parents perceived successful treatment to be least likely for their child's sleep disturbance (24%), depression (29%), and fatigue (35%). Parents who reported their child's functional status as New York Heart Association class III/IV were more likely to report that their child was experiencing "a great deal" of symptoms, compared with those who reported class I/II (51% vs 19%, P < .001). Parents who reported their child was experiencing a high degree of suffering from fatigue were also more likely to report a high symptom burden (P < .001).
Parents of children with advanced heart disease reported high symptom burden with a broad spectrum of symptoms. Parents reported fatigue and psychiatric symptoms frequently and rarely reported treatment as successful. Parents' view of their child's symptom burden was concordant with their perception of their child's functional status.
描述患有晚期心脏病住院儿童的父母报告的症状负担和症状管理效果。
这是一项前瞻性调查研究，纳入了 2018 年 3 月至 2019 年 2 月期间在一家机构因晚期心脏病住院的 161 名患儿的父母，使用“关爱心脏病患儿调查问卷”进行调查。
在 161 名患儿中，54%的患儿年龄小于 2 岁，诊断为单心室生理（39%）、肺动脉高压（12%）和其他先天性心脏病（28%）。超过一半（56%）的父母报告其子女存在高度（“非常多”/“很多”）症状。报告频率最高的症状依次为疼痛（68%）、疲劳（63%）和呼吸困难（60%）。在接受治疗的症状中，父母认为治疗最不成功的是睡眠障碍（24%）、抑郁（29%）和疲劳（35%）。与报告纽约心脏协会心功能分级 I/II 级的父母相比，报告心功能分级 III/IV 级的父母更有可能报告其子女“非常多”地经历症状（51% vs 19%，P < 0.001）。报告其子女因疲劳而感到高度不适的父母也更有可能报告其子女存在高症状负担（P < 0.001）。
患有晚期心脏病患儿的父母报告了高度的症状负担，症状谱广泛。父母经常报告疲劳和精神症状，很少报告治疗成功。父母对子女症状负担的看法与其对子女功能状态的看法一致。
