Division of Neonatology, Department of Obstetrics and Gynecology, University Hospital Merkur, Zagreb, Croatia.
Department of Pediatrics, School of Medicine, University of Zagreb, University Hospital Centre, Zagreb, Croatia.
Health Qual Life Outcomes. 2018 Mar 14;16(1):50. doi: 10.1186/s12955-018-0869-z.
Patients with congenital diaphragmatic hernia (CDH) have a high residual morbidity rate. We compared self-reported health-related quality of life (HRQoL) between patients with CDH and healthy children.
Forty-five patients with CDH who were born from January 1, 1990, through February 15, 2015, were matched to healthy, age-matched control participants at a 1:2 ratio. The health records of the study participants were reviewed to determine comorbid conditions, and HRQoL was assessed by both the participants and their parents with the Pediatric Quality of Life Inventory (PedsQL). The HRQoL scores of the patients with CDH and the control participants were compared by using analysis of variance to adjust for age group and sex. Among patients with CDH, analysis of variance was used to compare HRQoL scores across groups defined according to their characteristics at initial hospitalization, postdischarge events, and comorbid conditions.
Compared with control participants, patients with CDH had lower mean PedsQL scores, as reported by the parent and child, for the physical and psychosocial domains (P < 0.001). Risk factors associated with lower parent-reported HRQoL included bronchopulmonary dysplasia, longer initial hospitalization, severe cognitive impairment, and orthopedic symptoms; among patients with CDH, low HRQoL was associated with chronic respiratory issues.
Patients with CDH had lower HRQoL compared with healthy participants. Parent-reported HRQoL tended to be higher than child-reported HRQoL. Results were also inconsistent for the risk factors associated with HRQoL obtained by using child- and parent-reported scores. Therefore, when interpreting HRQoL in CDH survivors, a proxy report should not be considered a substitute for a child's self-report.
先天性膈疝（CDH）患者的残余发病率较高。我们比较了 CDH 患者和健康儿童的自我报告健康相关生活质量（HRQoL）。
1990 年 1 月 1 日至 2015 年 2 月 15 日期间出生的 45 例 CDH 患者与年龄匹配的健康对照参与者以 1:2 的比例配对。通过回顾研究参与者的健康记录来确定合并症，并用儿童生活质量问卷（PedsQL）评估参与者及其父母的 HRQoL。通过方差分析调整年龄组和性别后，比较 CDH 患者和对照组参与者的 HRQoL 评分。在 CDH 患者中，通过方差分析比较了根据其初始住院时的特征、出院后事件和合并症分组的 HRQoL 评分。
与对照组参与者相比，CDH 患者的父母和子女报告的 PedsQL 身体和心理社会领域的平均得分均较低（P<0.001）。与父母报告的 HRQoL 较低相关的风险因素包括支气管肺发育不良、初始住院时间较长、严重认知障碍和骨科症状；在 CDH 患者中，低 HRQoL 与慢性呼吸问题相关。
与健康参与者相比，CDH 患者的 HRQoL 较低。父母报告的 HRQoL 往往高于子女报告的 HRQoL。使用儿童和父母报告的分数获得的与 HRQoL 相关的风险因素的结果也不一致。因此，在解释 CDH 幸存者的 HRQoL 时，不应将代理报告视为儿童自我报告的替代品。
