BACKGROUND Post-haemorrhagic ventricular dilatation (PHVD) is commonly seen in extremely preterm babies, carries significant morbidity, and may cause neonatal mortality. There is a lack of literature on the subsequent health-related quality of life (HRQoL) in childhood. The aim of this work was to assess the quality of life of preterm babies after PHVD at 10 years of age using two validated questionnaires. METHODS Children with PHVD were assessed as part of the 10-year follow-up of the drainage, irrigation, and fibrinolytic therapy trial. The HRQoL outcome was measured using parent-reported EQ-5D-5L and HUI-3 questionnaires. Both questionnaires produce a summary score anchored at 1 (best health) and 0 (equivalent to death). RESULTS Median scores at follow-up were 0.65 (IQR 0.36-0.84; n = 44) for the EQ-5D-5L and 0.52 (IQR 0.22-0.87; n = 51) for the HUI-3. Similar proportions had a score below 0.2 (HRQoL [20%], HUI-3 [21%]), while 20% had a HRQoL score above 0.80 compared to 34% using HUI-3. The most severe problems from the EQ-5D-5L were reported in the self-care, mobility, and activity domains, while the HUI-3 reported worse problems in ambulation, cognition, and dexterity domains. Infants with worse (grade 4) intraventricular haemorrhage had poorer HRQoL than those with grade 3 bleeds. CONCLUSION Children who survive to 10 years of age after PHVD have on average lower HRQoL than their peers. However, the reported range is wide, with a quarter of the children having scores above 0.87 (similar to population norms), while a fifth have very low HRQol scores. Impact was not uniform across domains, with mobility/ambulation a concern across both measures.

中文翻译：

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患有出血后心室扩张的早产儿 10 年随访的生活质量：一项队列研究。

背景出血后心室扩张（PHVD）常见于极早产儿，发病率很高，并可能导致新生儿死亡。缺乏关于儿童期随后的健康相关生活质量（HRQoL）的文献。这项工作的目的是使用两份经过验证的问卷来评估 10 岁时患有 PHVD 的早产儿的生活质量。方法 作为引流、冲洗和纤溶治疗试验 10 年随访的一部分，对 PHVD 儿童进行评估。HRQoL 结果使用家长报告的 EQ-5D-5L 和 HUI-3 问卷进行测量。两份问卷均产生一个总结分数，分别为 1（最佳健康状况）和 0（相当于死亡）。结果 EQ-5D-5L 随访时的中位得分为 0.65（IQR 0.36-0.84；n = 44），HUI-3 的中位得分为 0.52（IQR 0.22-0.87；n = 51）。类似比例的得分低于 0.2（HRQoL [20%]，HUI-3 [21%]），而 20% 的人 HRQoL 得分高于 0.80，而使用 HUI-3 的比例为 34%。EQ-5D-5L 报告的最严重问题出现在自我护理、移动性和活动领域，而 HUI-3 报告的步行、认知和敏捷领域问题更严重。脑室内出血较严重（4 级）的婴儿的 HRQoL 比 3 级出血的婴儿较差。结论 PHVD 后存活至 10 岁的儿童平均 HRQoL 低于同龄人。然而，报告的范围很广，四分之一的儿童的分数高于 0.87（与人口标准相似），而五分之一的儿童的 HRQol 分数非常低。各个领域的影响并不统一，流动性/步行是这两项指标的关注点。