中国南京地区川崎病合并冠状动脉瘤患者的长期健康相关生活质量:最大的单中心评估结果

IF 1.1 Q4 RHEUMATOLOGY Archives of rheumatology Pub Date : 2024-12-12 eCollection Date: 2024-12-01 DOI:10.46497/ArchRheumatol.2024.10546
Wenting Gao, Ying Meng, Yu Chen, Mei Chen
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引用次数: 0

摘要

目的:本研究旨在比较中国南京地区最大的儿科医疗中心患有和不患有冠状动脉瘤(CAAs)的川崎病(KD)儿童的长期健康相关生活质量。患者和方法:回顾性研究共纳入107例患者(男性54例,女性53例;平均年龄:3.4±1.8岁;2012年1月至2022年12月期间(2.12至1.75年)。在这些患者中,64例诊断为KD所致CAAs的儿童患者和43例无CAAs的住院KD儿童患者作为对照组。将CAAs患儿按动脉瘤大小分为两组:动脉瘤组和巨动脉瘤组。在基线和长期随访期间收集儿童报告和家长/代理报告的儿童生活质量调查。结果:中位随访时间为5.58年(1.03 ~ 10.67年)。确诊时平均年龄3.43±1.75岁(范围2.12 ~ 12.19岁)。在基线时,巨大动脉瘤组患儿报告的总分为48.63±16.60,家长报告的平均得分为46.76±14.77。动脉瘤组患儿报告和家长/代理人报告的结果分别为54.71±15.82和52.73±13.34,对照组分别为48.30±28.24和46.35±15.79。在长期随访中,动脉瘤组患儿平均得分为81.61±19.50分,比对照组(p=0.014)高9.70分(95%可信区间(CI) 2.22 ~ 17.18),比巨动脉瘤组(p=0.012)低9.51分(95% CI: 2.02 ~ 16.98)。动脉瘤组家长平均评分为81.03±12.57分,显著低于对照组(p=0.010),显著高于巨动脉瘤组(p=0.009)。结论:在长期随访中,一部分未完全康复的CAAs患儿经常遇到影响其健康的问题。因此,常规门诊健康相关生活质量筛查可作为一项适当的支持性服务,帮助识别有CAAs病史的患者,以消除初步临床改善后长期残疾的风险。
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Long-term health-related quality of life in Kawasaki disease complicated with coronary artery aneurysm in the Nanjing region of China: Results of the largest single-center assessment.

Objectives: The study aimed to compare the long-term health-related quality of life in children with Kawasaki disease (KD) with and without coronary artery aneurysms (CAAs) in the largest pediatric medical center in the Nanjing region of China.

Patients and methods: The retrospective study included a total of 107 patients (54 males, 53 females; mean age: 3.4±1.8 years; range, 2.12 to 1.75 years) between January 2012 and December 2022. Among these patients were a cohort of 64 child patients diagnosed with CAAs due to KD and a control group of 43 hospitalized child patients with KD without CAAs. The children with CAAs were divided into two groups according to the size of their aneurysms: the aneurysm group and the giant aneurysm group. Both child-reported and parent/proxy-reported Pediatric Quality of Life Inventory surveys were collected at baseline and during long-term follow-up.

Results: The median follow-up duration was 5.58 years (range, 1.03 to 10.67 years). The mean age at the time of diagnosis was 3.43±1.75 years (range, 2.12 to 12.19 years). At baseline, children reported a total score of 48.63±16.60 and parents reported a mean score of 46.76±14.77 in the giant aneurysm group. The child-reported and parent/proxy-reported outcomes were 54.71±15.82 and 52.73±13.34 in the aneurysm group and 48.30±28.24 and 46.35±15.79 in the control group, respectively. In long-term follow-up, children in the aneurysm group reported a mean score of 81.61±19.50, which was 9.70 (95% confidence interval (CI): 2.22-17.18) points higher than that of the control group (p=0.014) and 9.51 (95% CI: 2.02-16.98) points lower than that of the giant aneurysm group (p=0.012). Similarly, parents reported a mean score of 81.03±12.57 in the aneurysm group, which was significantly lower than that of the control group (p=0.010) and significantly higher than that of the giant aneurysm group (p=0.009).

Conclusion: A proportion of children presenting with CAAs without complete recovery often encountered issues that disrupted their well-being during long-term follow-up. Therefore, routine outpatient health-related quality of life screening might be set as an appropriate supportive service to assist in identifying patients with a history of CAAs to eliminate the risk for long-term disabilities following the initial clinical improvement.

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