Abstract：
OBJECTIVE: The objective was to measure health-related quality of life (HRQoL) of children following treatment of all-cause tracheomalacia with aortopexy.
METHODS: Children ≥5 years and parents of children <18 years who had undergone aortopexy completed the Paediatric Quality of Life Inventory (PedsQL4.0). Scores were compared to published norms.
RESULTS: Completed questionnaires were received from 35 parents (65%) and 10 children (38%). Median age at aortopexy was 9.8 months (1 month-12.7 years) and median years of follow-up was 2.6 (4 months-6.9 years). Children who completed questionnaires had a median age of 8.4 (5.7-13.4) years. Parent and child-reported total PedsQL scores were 69.61 (SD : 19.74), and 63.15 (SD : 20.40) respectively. Half of parents and 80% of children reported scores suggesting poor HRQoL outcomes. Parent-reported total, physical and psycho-social scores were lower than those of healthy children and those with acute illness but comparable to children with chronic health conditions and cardiovascular disease. Similarly, children themselves reported comparable total scores to children with chronic illness but child-reported psycho-social scores were lower in the aortopexy group than any other group. There was no association between PedsQL scores and cause of malacia, age or time since aortopexy. The presence of complex congenital comorbidities had a significant (p < 0.05) impact on HRQoL scores.
CONCLUSIONS: Following aortopexy children remain at risk of poor HRQoL, especially those with complex comorbidities. HRQoL reported by both parent and child provides important insight into the lives of children following this procedure. Further longitudinal and qualitative study are required to better understand this complex group.
METHODS: Children ≥5 years and parents of children <18 years who had undergone aortopexy completed the Paediatric Quality of Life Inventory (PedsQL4.0). Scores were compared to published norms.
RESULTS: Completed questionnaires were received from 35 parents (65%) and 10 children (38%). Median age at aortopexy was 9.8 months (1 month-12.7 years) and median years of follow-up was 2.6 (4 months-6.9 years). Children who completed questionnaires had a median age of 8.4 (5.7-13.4) years. Parent and child-reported total PedsQL scores were 69.61 (SD : 19.74), and 63.15 (SD : 20.40) respectively. Half of parents and 80% of children reported scores suggesting poor HRQoL outcomes. Parent-reported total, physical and psycho-social scores were lower than those of healthy children and those with acute illness but comparable to children with chronic health conditions and cardiovascular disease. Similarly, children themselves reported comparable total scores to children with chronic illness but child-reported psycho-social scores were lower in the aortopexy group than any other group. There was no association between PedsQL scores and cause of malacia, age or time since aortopexy. The presence of complex congenital comorbidities had a significant (p < 0.05) impact on HRQoL scores.
CONCLUSIONS: Following aortopexy children remain at risk of poor HRQoL, especially those with complex comorbidities. HRQoL reported by both parent and child provides important insight into the lives of children following this procedure. Further longitudinal and qualitative study are required to better understand this complex group.
摘要：
目的：目的是测量全因气管软化症治疗后儿童的健康相关生活质量（HRQoL）。
方法：≥5岁的儿童和<18岁的接受过主动脉固定术的儿童的父母完成了儿科生活质量量表（PedsQL4.0）。将分数与已发布的规范进行比较。
结果：已完成的问卷来自35名父母（65％）和10名儿童（38％）。主动脉固定术的中位年龄为9.8个月（1个月-12.7年），中位随访年为2.6年（4个月-6.9年）。完成问卷的儿童的中位年龄为8.4（5.7-13.4）岁。父母和儿童报告的PedsQL总分为69.61（SD：19.74），和63.15（SD：20.40）。一半的父母和80%的儿童报告的得分表明HRQoL结果较差。家长报告的总数，身体和心理社会评分低于健康儿童和患有急性疾病的儿童，但与患有慢性健康状况和心血管疾病的儿童相当。同样，儿童本身报告的总评分与慢性病儿童相当,但主动脉固定术组儿童报告的心理社会评分低于其他任何组.PedsQL评分与malacia的病因无关联,自主动脉成形术以来的年龄或时间。复杂先天性合并症的存在对HRQoL评分有显著影响(p<0.05)。
结论：在接受主动脉摘除术后，儿童仍有不良HRQoL的风险，尤其是那些有复杂合并症的人.父母和孩子报告的HRQoL为遵循此程序的孩子的生活提供了重要的见解。需要进一步的纵向和定性研究才能更好地理解这个复杂的群体。
方法：≥5岁的儿童和<18岁的接受过主动脉固定术的儿童的父母完成了儿科生活质量量表（PedsQL4.0）。将分数与已发布的规范进行比较。
结果：已完成的问卷来自35名父母（65％）和10名儿童（38％）。主动脉固定术的中位年龄为9.8个月（1个月-12.7年），中位随访年为2.6年（4个月-6.9年）。完成问卷的儿童的中位年龄为8.4（5.7-13.4）岁。父母和儿童报告的PedsQL总分为69.61（SD：19.74），和63.15（SD：20.40）。一半的父母和80%的儿童报告的得分表明HRQoL结果较差。家长报告的总数，身体和心理社会评分低于健康儿童和患有急性疾病的儿童，但与患有慢性健康状况和心血管疾病的儿童相当。同样，儿童本身报告的总评分与慢性病儿童相当,但主动脉固定术组儿童报告的心理社会评分低于其他任何组.PedsQL评分与malacia的病因无关联,自主动脉成形术以来的年龄或时间。复杂先天性合并症的存在对HRQoL评分有显著影响(p<0.05)。
结论：在接受主动脉摘除术后，儿童仍有不良HRQoL的风险，尤其是那些有复杂合并症的人.父母和孩子报告的HRQoL为遵循此程序的孩子的生活提供了重要的见解。需要进一步的纵向和定性研究才能更好地理解这个复杂的群体。
