Department of Pediatrics, Institute of Clinical Sciences, Gothenburg University, The Queen Silvia Children's Hospital, 416 85, Gothenburg, Sweden.
Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, 416 85, Gothenburg, Sweden.
Orphanet J Rare Dis. 2022 May 21;17(1):207. doi: 10.1186/s13023-022-02361-2.
After repair of esophageal atresia (EA), childhood survivors commonly present with digestive and respiratory morbidity, and around 55% have associated anomalies. Although it is known that these problems can reduce health-related quality of life in children with EA, less is understood about the impact on the family. We aimed to identify factors related to family impact in children with EA.
One parent each of a child with EA (2-18 years) in 180 families from Sweden and Germany answered the PedsQL™ Family Impact Module as the dependent variable. The independent variables were the child's parent-reported health-related quality of life as measured by PedsQL™ 4.0, current symptoms, school situation, and parent/family characteristics together with child clinical data from the medical records.
Stepwise multivariable regression analysis showed a multifactorial model of the total family impact scores (R = 0.60), with independent factors being the child's overall generic health-related quality of life, school-absence ≥ 1/month, severe tracheomalacia, a family receiving carer's allowance, and a parent with no university/college education, p < 0.05. Logistic regression analysis showed that an increased number of symptoms in the child the preceding 4 weeks lowered the family impact scores; however, the child's feeding (R = 0.35) and digestive symptoms (R = 0.25) explained more in the variation of scores than the child's respiratory symptoms (R = 0.09), p < 0.0001.
Family functioning may be a contributing factor to the maintenance of child health. The study findings suggest multifactorial explanations to family impact in children with EA, which are essential when optimizing the support to these families in clinical and psychosocial practice. Future research should explore experiences of family impact from all family members' perspectives and multicenter studies are warranted to understand better the effectiveness of psychosocial-educational interventions to families of children with EA.
食管闭锁（EA）修复后，儿童幸存者常出现消化和呼吸系统疾病，约 55%存在相关畸形。尽管已知这些问题会降低 EA 患儿的健康相关生活质量，但对家庭的影响了解较少。我们旨在确定与 EA 患儿家庭影响相关的因素。
来自瑞典和德国的 180 个 EA 患儿家庭的每位家长（2-18 岁）均回答了 PedsQLTM 家庭影响模块，作为因变量。自变量为患儿的父母报告的健康相关生活质量，用 PedsQLTM 4.0 测量，当前症状、学校情况、父母/家庭特征以及从病历中获得的患儿临床数据。
逐步多元回归分析显示，总家庭影响评分的多因素模型（R=0.60），独立因素为患儿总体健康相关生活质量、每月缺课≥1 天、严重气管软化、家庭领取护理津贴和父母未受过大学/学院教育，p<0.05。Logistic 回归分析显示，患儿前 4 周症状增多会降低家庭影响评分；然而，患儿的喂养（R=0.35）和消化症状（R=0.25）比呼吸症状（R=0.09）对评分变化的解释更多，p<0.0001。
家庭功能可能是维持儿童健康的一个因素。研究结果表明，EA 患儿家庭影响存在多因素解释，这对于在临床和心理社会实践中为这些家庭提供最佳支持至关重要。未来的研究应该从所有家庭成员的角度探讨家庭影响的经验，并进行多中心研究，以更好地了解 EA 患儿家庭的心理社会教育干预的有效性。
