Paediatric and Congenital Cardiology Department, Arnaud De Villeneuve University Hospital, 371 Avenue du Doyen Giraud, 34295, Montpellier, France.
Centre for Studies and Research On Health Services and Quality of Life, Public Health and Chronic Diseases Laboratory, Aix Marseille University, Marseille, France.
Health Qual Life Outcomes. 2020 Nov 12;18(1):366. doi: 10.1186/s12955-020-01615-6.
In the context of tremendous progress in congenital cardiology, more attention has been given to patient-related outcomes, especially in assessing health-related quality of life (HRQoL) of patients with congenital heart diseases (CHD). However, most studies have mainly focused on teenagers or adults and currently, few HRQoL controlled data is available in young children. This study aimed to evaluate HRQoL of children with CHD aged 5 to 7 y.o., in comparison with contemporary peers recruited in school, as well as the factors associated with HRQoL in this population.
This multicentre controlled prospective cross-sectional study included 124 children with a CHD (mean age = 6.0 ± 0.8 y, 45% female) during their outpatient visit and 125 controls (mean age = 6.2 ± 0.8 y, 54% female) recruited at school. A generic paediatric HRQoL instrument was used (PedsQL 4.0).
Self-reported HRQoL in children with CHD was similar to controls, overall (73.5 ± 1.2 vs. 72.8 ± 1.2, P = 0.7, respectively), and for each dimension. Parents-reported HRQoL was significantly lower in the CHD group than in controls. HRQoL was predicted by the disease severity and by repeated invasive cardiac procedures (surgery or catheterization).
HRQoL in young children with CHD aged 5 to 7 years old was good and similar to controls. This study contributed to the growing body of knowledge on HRQoL in congenital cardiology and emphasized the need for child and family support in the most complex CHD. Trial registration This study was approved by the institutional review board of Montpellier University Hospital (2019_IRB-MTP_02-19) on 22 February 2019 and was registered on ClinicalTrials.gov (NCT03931096) on 30 April 2019, https://clinicaltrials.gov/ct2/show/NCT03931096 .
在先天性心脏病领域取得巨大进展的背景下,人们越来越关注患者相关结局,尤其是评估先天性心脏病(CHD)患者的健康相关生活质量(HRQoL)。然而,大多数研究主要集中在青少年或成年人,目前,很少有关于幼儿 HRQoL 的对照数据。本研究旨在评估 5 至 7 岁 CHD 患儿的 HRQoL,并与同期在校儿童进行比较,同时分析该人群 HRQoL 的相关影响因素。
本研究为多中心、对照、前瞻性的横断面研究,共纳入 124 名门诊就诊的 CHD 患儿(平均年龄 6.0 ± 0.8 岁,45%为女性)和 125 名在校同龄儿童(平均年龄 6.2 ± 0.8 岁,54%为女性)。采用普适性儿童 HRQoL 量表(PedsQL 4.0)进行评估。
患儿自我报告的 HRQoL 与对照组总体相似(分别为 73.5 ± 1.2 和 72.8 ± 1.2,P=0.7),各维度也相似。父母报告的 CHD 患儿 HRQoL 显著低于对照组。疾病严重程度和反复有创性心脏介入治疗(手术或导管治疗)可预测 HRQoL。
5 至 7 岁 CHD 患儿的 HRQoL 良好,与对照组相似。本研究丰富了先天性心脏病 HRQoL 领域的知识体系,强调了为复杂 CHD 患儿及其家庭提供支持的必要性。