Department of Pediatrics, Institute of Clinical Sciences, The Queen Silvia Children's Hospital, Gothenburg University, Gothenburg, 416 85, Sweden.
Department of Pediatric Surgery, Queen Silvia Children's Hospital, Sahlgrenska University Hospital, Gothenburg, Sverige.
Orphanet J Rare Dis. 2023 Aug 9;18(1):237. doi: 10.1186/s13023-023-02836-w.
Children born with esophageal atresia experience feeding difficulties. This study investigates the association of feeding difficulties and generic health-related quality of life among children aged 2-7 and 8-17 years, born with esophageal atresia.
108 families (n = 36 aged 2-7 years; n = 72 aged 8-17) answered a survey regarding difficulties in their child's mealtimes and a validated generic health-related quality of life instrument(PedsQL 4.0). Clinical data was collected from hospital records. The association of feeding difficulties and health-related quality of life was analysed trough Mann-Whitney U-test. Linear regression determined whether the number of concurrent feeding difficulties in the child decreased the health-related quality of life scores. P < 0.05 was considered significant.
In children aged 2-7 and 8-17 years, to have a gastrostomy, to use a food infusion pump, need for energy-enriched food and eating small portions were respectively significantly associated with lower total health-related quality of life scores in the parent-reports (p < 0.05). Most of the feeding difficulties had a negative significant relationship with the domains of physical and social functioning. Additionally, in the older age group, long mealtimes and adult mealtime supervision were associated with lower scores in both child and parent reports. In both age groups, an increased number of feeding difficulties in the child decreased the total generic health-related quality of life scores (p < 0.01).
Specific feeding difficulties are associated with low health-related quality of life among children with esophageal atresia. An increasing number of feeding difficulties is associated to decreasing health-related quality of life-scores. Further research is needed to understand these associations.
患有食管闭锁的儿童在进食方面存在困难。本研究旨在探讨食管闭锁患儿在 2-7 岁和 8-17 岁时，喂养困难与一般健康相关生活质量之间的关系。
108 个家庭（2-7 岁组 n=36；8-17 岁组 n=72）回答了一份关于孩子进餐困难的调查问卷和一份经过验证的一般健康相关生活质量量表（PedsQL 4.0）。临床数据从医院记录中收集。通过曼-惠特尼 U 检验分析喂养困难与健康相关生活质量之间的关系。线性回归确定孩子同时存在的喂养困难数量是否会降低健康相关生活质量评分。P<0.05 被认为具有统计学意义。
在 2-7 岁和 8-17 岁的儿童中，胃造口术、使用食物输注泵、需要能量丰富的食物和进食少量食物与父母报告的总健康相关生活质量评分降低显著相关（p<0.05）。大多数喂养困难与生理功能和社会功能领域呈负相关。此外，在年龄较大的组中，进餐时间长和成人监督进餐与儿童和父母报告的评分降低均显著相关。在两个年龄组中，儿童存在的喂养困难数量增加会降低总体健康相关生活质量评分（p<0.01）。
特定的喂养困难与食管闭锁儿童的生活质量相关。喂养困难数量的增加与生活质量评分的降低相关。需要进一步研究以了解这些关联。
