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婴幼儿期接受蒂宾根腭板治疗的Robin序列患儿健康相关生活质量

Health-related quality of life in children with Robin sequence following Tübingen palatal plate treatment in infancy
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该队列研究纳入17例孤立性Robin序列患儿（平均8.5岁）和24例腭裂（±唇裂）非RS患儿（平均8.1岁），采用KINDL-R、KIDSCREEN-52及CLEFT-Q问卷评估其健康相关生活质量。结果显示，RS患儿生活质量与腭裂患儿相似，且优于欧洲参考队列。

要点

  • RS患儿学龄期生活质量与腭裂患儿相似且优于参考人群。
  • 在欺凌和财务资源分量表上，RS患儿高于平均水平的比例是参考人群的3至4倍。
  • 婴儿期TPP治疗可能有助于维持较好的远期生活质量。

核心结论

  • 7-11年前在婴儿期接受蒂宾根腭板治疗的RS患儿，在小学年龄段的健康相关生活质量良好。

研究设计与样本

  • 队列研究，纳入17例孤立性RS患儿（平均年龄8.5岁）和24例腭裂（±唇裂）非RS患儿（平均年龄8.1岁）。
  • 使用两种通用生活质量问卷（KINDL-R和KIDSCREEN-52）及唇腭裂特异性CLEFT-Q问卷，从父母和儿童两个角度评估。
  • 结果与代表欧洲的参考队列数据进行比较。

主要发现

  • RS患儿的生活质量与腭裂患儿相似，且优于参考队列。
  • 在「欺凌」分量表（代理47%，自我65%）和「经济资源」分量表（代理65%，自我71%）中，RS患儿高于平均水平的比例是参考人群（16%）的3至4倍。

关键数值与推荐

  • 欺凌分量表：代理47%，自评65%；经济资源：代理65%，自评71%；参考人群为16%。
  • 未提供其他具体数值或推荐阈值。

临床怎么用

  • 临床中可关注RS患儿学龄期的生活质量，尤其欺凌和经济资源方面，但总体不需过度担忧。
  • TPP治疗后的长期随访显示生活质量良好，可作为治疗效果的参考。

局限性

  • 样本量较小（17例RS），且未提供统计检验值或置信区间。
  • 未报告对照组与RS组的具体差异数值，仅描述相似。

以上解读依据论文摘要（全文未开放获取或许可不允许翻译转载）。

原文

Objective Children with Robin sequence (RS) are characterised by micrognathia/retrognathia, glossoptosis and upper airway obstruction, often resulting in hypoxemic episodes and growth failure, potentially impairing their health-related quality of life (HRQoL). Few studies, however, have yet tried to objectively quantify HRQoL in children with RS. The aim of this cohort study was to investigate HRQoL in children with RS 7–11 years after treatment with the Tübingen palatal plate (TPP) in infancy. Methods Using two generic health-related QoL-questionnaires from the parental and child perspective (KINDL-R and KDISCREEN-52) and also the cleft-specific CLEFT-Q questionnaire for children, HRQoL was assessed in 17 children with isolated RS (mean age 8.5 years) and compared with that of 24 children with a cleft palate (± cleft lip, no RS; mean age 8.1 years). Results were also compared with data from a representative European reference cohort. Results HRQoL was similar in children with clefts and those with RS and better than that of the reference cohort. In the subscales ‘Bullying’ (proxy 47%, self 65%) and ‘Financial Resources’ (proxy 65%, self 71%) the proportion of children with above average results was even three to four times larger than in the reference population (16%). Conclusion These results suggest a good HRQoL at primary school age in these children following TPP therapy in infancy.

来源：Archives of Disease in Childhood，查看原文。版权归原作者所有。

引用

  1. Archives of Disease in Childhood：Health-related quality of life in children with Robin sequence following Tübingen palatal plate treatment in infancy
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供执业医师工作参考，不替代临床判断；数值与分级以指南原文为准。