Department of Neonatology, North Hospital, APHM University Hospital, Marseille, France.
Public Health Department-Research Unit EA3279, Aix-Marseille University, Marseille, France.
Arch Dis Child. 2019 Apr;104(4):333-339. doi: 10.1136/archdischild-2018-315046. Epub 2018 Jun 30.
To determine the quality of life (QoL) of school-aged children who were born <28 weeks of gestation and who have no resultant major disabilities.
DESIGN, SETTING AND PATIENTS: A cross-sectional multicentre study of extremely preterm (EPT) infants born <28 weeks, discharged alive and free from severe impairments (cerebral palsy, autism, major cognitive disabilities). Two generic, self-evaluation and hetero-evaluation (by parent) QoL measurement questionnaires (Kidscreen 10/VSP-A) were used and then compared with French population reference.
Clinical examination, an assessment of cognitive functions and QoL between 7 and 10 years of age.
40 (7.5%) severely disabled children were excluded. Among those 471 eligible, the lost to follow-up group (169 (36%)) paralleled those 302 (64%) included in the study. The mean gestational age was 26.2 (±0.8), birth weight was 879 (±181) g and the mean age was 8.4 (±0.87) years. 48% of participants had minor or moderate cognitive disabilities based on their Full-Scale Index Quotient. Working memory, attention and mental flexibility scored as low-average. Except for family relationships, the EPT QoL VSP-A and Kidscreen 10 assessment were significantly lower based on the children's and parent's perspectives. Children reported the most significant QoL decline as (1) friends' relationships, (2) self-esteem and (3) leisure, while parents indicated (1) psychological well-being, (2) schoolwork and (3) vitality.
The QoL of a school-age EPT child without severe impairment was lower relative to a reference population from both the parents' and child's points of view. This evaluation should help to better understand the long-term outcomes and to provide better support for them and their families.
NCT01675726, pre-results.
确定无严重残疾的出生胎龄<28 周的学龄儿童的生活质量（QoL）。
设计、地点和患者：一项对出生胎龄<28 周、存活且无严重损伤（脑瘫、自闭症、严重认知障碍）的极早产儿（EPT）的横断面多中心研究。使用了两种通用的、自我评估和异评估（由家长）的 QoL 测量问卷（Kidscreen 10/VSP-A），然后与法国人群参考值进行了比较。
7 至 10 岁时的临床检查、认知功能评估和 QoL。
排除了 40 名（7.5%）严重残疾儿童。在 471 名符合条件的儿童中，失访组（169 名（36%））与纳入研究的 302 名（64%）相似。平均胎龄为 26.2（±0.8），出生体重为 879（±181）g，平均年龄为 8.4（±0.87）岁。48%的参与者根据全量表指数商数存在轻度或中度认知障碍。工作记忆、注意力和心理灵活性的得分处于中下水平。除了家庭关系外，EPT QoL VSP-A 和 Kidscreen 10 的评估结果显示，从儿童和家长的角度来看，EPT 儿童的 QoL 显著降低。儿童报告的 QoL 下降最显著的是（1）朋友关系，（2）自尊和（3）休闲，而父母则表示（1）心理健康，（2）学业和（3）活力。
与来自父母和儿童的参考人群相比，无严重损伤的学龄期 EPT 儿童的生活质量较低。这种评估有助于更好地了解长期结果，并为他们及其家庭提供更好的支持。
NCT01675726，预结果。
