Pediatric and Congenital Cardiology Department, M3C Regional Reference Center, University Hospital, Physiology and Experimental Biology of Heart and Muscles Laboratory, PHYMEDEXP, UMR CNRS 9214-Inserm U1046, University of Montpellier, Montpellier, France; Self-perceived Health Assessment Research Unit, EA3279, Public Health Department, Aix-Marseille University, Marseille, France.
Pediatric Cardiology Department, AP-HP, Necker-Enfants malades, M3C National Reference Center, Paris Descartes University, Sorbonne Paris Cité, Paris, France.
Arch Cardiovasc Dis. 2018 Mar;111(3):180-188. doi: 10.1016/j.acvd.2017.05.013. Epub 2017 Nov 1.
The quality of life (QoL) of children receiving vitamin K antagonist (VKA) treatment has been scarcely studied.
To assess QoL of children, and its evolution, throughout our non-selective international normalized ratio (INR) self-monitoring education programme.
Children and parents completed QoL questionnaires (Qualin, PedsQL) during education sessions. Scores were compared with those from controls.
A total of 111 children (mean±standard deviation age 8.7±5.4 years) were included over a 3-year period. Indications for VKA treatment were congenital heart diseases (valve replacement [42.3%], total cavopulmonary connection [29.7%]), myocardiopathy (11.7%), coronary aneurysm (7.2%), venous/intracardiac thrombosis (4.5%), pulmonary artery hypertension (1.8%), arrhythmia (0.9%) and extra-cardiac disease (1.8%). Eighty children, 105 mothers and 74 fathers completed the QoL questionnaires. QoL was good among children aged 1-4 years and moderately impaired in those aged between 5 and 18 years. There was no significant relationship between self-reported QoL and patient's sex, type of VKA, number of group sessions attended, disease duration or time of diagnosis (prenatal or postnatal). QoL scores were significantly lower among children with congenital heart diseases compared with other diseases. There were few differences in QoL between children under transient VKA treatment and those treated for life. Parental proxy QoL scoring correlated well with but was significantly lower than child self-assessments. QoL reported by mothers increased throughout the education programme, independently of any improvement of the health condition.
This QoL study provides original data from a large cohort of children and their parents participating in a formalized INR self-monitoring education programme for VKA treatment.
接受维生素 K 拮抗剂（VKA）治疗的儿童的生活质量（QoL）很少被研究。
通过我们的非选择性国际标准化比值（INR）自我监测教育计划，评估儿童的 QoL 及其变化。
在教育课程期间，儿童及其父母完成了 QoL 问卷（Qualin，PedsQL）。将评分与对照组进行比较。
在 3 年期间，共纳入 111 名儿童（平均年龄±标准差 8.7±5.4 岁）。VKA 治疗的适应症是先天性心脏病（瓣膜置换[42.3%]，全腔静脉肺动脉连接[29.7%]）、心肌病（11.7%）、冠状动脉瘤（7.2%）、静脉/心内血栓形成（4.5%）、肺动脉高压（1.8%）、心律失常（0.9%）和心脏外疾病（1.8%）。80 名儿童、105 名母亲和 74 名父亲完成了 QoL 问卷。1-4 岁儿童的 QoL 良好，5-18 岁儿童的 QoL 中度受损。自我报告的 QoL 与患者的性别、VKA 类型、参加小组课程的次数、疾病持续时间或诊断时间（产前或产后）之间没有显著关系。与其他疾病相比，患有先天性心脏病的儿童的 QoL 评分明显较低。接受短暂性 VKA 治疗的儿童与接受终身治疗的儿童之间的 QoL 差异很小。父母代理的 QoL 评分与儿童自评相关性良好，但明显低于儿童自评。母亲的 QoL 评分在整个教育计划中逐渐提高，与健康状况的任何改善无关。
这项 QoL 研究提供了来自参与 VKA 治疗的正式 INR 自我监测教育计划的大量儿童及其父母的原始数据。
