儿童细菌性脑膜炎年轻幸存者的日常功能和（与健康相关的）生活质量。

IF 3 3区医学 Q1 PEDIATRICS

European Journal of Pediatrics Pub Date : 2024-12-01 Epub Date: 2024-10-18 DOI:10.1007/s00431-024-05819-6

Omaima El Tahir, Rogier C J de Jonge, Jeroen Pronk, Sui Lin Goei, Caroline B Terwee, A Marceline Tutu van Furth

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引用次数: 0

摘要

调查儿童细菌性脑膜炎（BM）青壮年幸存者的日常功能、健康相关生活质量（HRQoL）和总体生活质量（QoL），从而揭示长期结果，为全球脑膜炎负担估算做出贡献。在这项横断面研究中，我们对参加荷兰20|30年后脑膜炎研究的483名儿童细菌性脑膜炎幸存者使用了韦斯功能损伤评分量表-自我报告（WFIRS-S）、患者报告结果测量信息系统量表v全球健康v1.2（PROMIS-GH）、PROMIS-29概况v2.01和PROMIS社会角色和活动满意度简表4a v2.0工具。计算了WFIRS-S的平均得分以及PROMIS工具的平均T分。将儿童脑膜炎幸存者的 PROMIS 评分与年龄匹配的荷兰普通人群参考评分进行了比较。总体而言，儿童脑卒中幸存者的日常功能、人力资源质量生活和总体质量生活（Global02）水平与年龄匹配的荷兰参照组相当，甚至更好。10.2%的儿童脑卒中幸存者表示心理健康状况不佳，1.0%的儿童脑卒中幸存者表示身体健康状况不佳。儿童期脑卒中幸存者的总体生活质量（Global02）平均得分为3.81分（从1分表示生活质量差，到5分表示生活质量优）：结论：与年龄相匹配的荷兰参考评分相比，儿童血液肿瘤年轻幸存者的日常功能、人力资源质量生活和总体质量生活水平相似，甚至更好。然而，临床医生和医护人员应注意一些儿童脑膜炎幸存者的身心健康状况不佳，因为这些幸存者也面临着日常生活功能方面的问题：- 急性细菌性脑膜炎是一种危及生命的感染，可能会导致严重的终身残疾。- 学龄期细菌性脑膜炎幸存者的健康相关生活质量下降：- 本研究表明，儿童细菌性脑膜炎幸存者的健康相关生活质量会随着时间的推移而提高--然而，青少年和年轻成年人幸存者的心理健康状况不佳与日常生活功能受损密切相关。

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Daily functioning and (health-related) quality of life of young adult survivors of childhood bacterial meningitis.

To investigate daily functioning, health-related quality of life (HRQoL), and overall quality of life (QoL) in young adult survivors of childhood bacterial meningitis (BM) thereby shedding light on very long-term outcomes and contributing to global meningitis burden estimates. In this cross-sectional study, the Weiss Functional Impairment Rating Scale-Self Report (WFIRS-S), the Patient-Reported Outcomes Measurement Information System Scale vGlobal Health v1.2 (PROMIS-GH), PROMIS-29 profile v2.01 and PROMIS Satisfaction with Social Roles and Activities Short Form 4a v2.0 instruments were administered to 483 survivors of childhood BM who participated in the 20|30 Dutch Postmeningitis study. Mean WFIRS-S scores were calculated as well as mean T-scores of the PROMIS instruments. PROMIS scores of survivors of childhood BM were compared with age-matched Dutch reference scores from the general population. Overall, survivors of childhood BM reported comparable or even better levels of daily functioning, HRQoL, and overall QoL (Global02) than the age-matched Dutch reference group. 10.2% of survivors of childhood BM reported poor mental health and 1.0% of survivors of childhood BM reported poor physical health. The average score of survivors of childhood BM for overall QoL (Global02) was 3.81 (on a scale from 1, indicating poor QoL, to 5, indicating excellent QoL).

Conclusion: Young adult survivors of childhood BM reported similar and even better levels of daily functioning, HRQoL, and overall QoL than age-matched Dutch reference scores. However, clinicians and healthcare workers should be mindful of poor mental and physical health of some survivors of childhood BM because these survivors also face problems with functioning in daily life.

What is known: • Acute bacterial meningitis is a life-threatening infection which may lead to devastating lifelong disabilities. • Health-related quality of life is decreased in school-age survivors of bacterial meningitis.

What is new: • The present study shows that HRQoL in survivors of childhood BM improves over time • However, especially poor mental health in adolescent and young adult survivors is associated with impaired functioning in daily life.

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来源期刊

European Journal of Pediatrics 医学-小儿科

CiteScore

5.90

自引率

2.80%

发文量

367

审稿时长

3-6 weeks

期刊介绍： The European Journal of Pediatrics (EJPE) is a leading peer-reviewed medical journal which covers the entire field of pediatrics. The editors encourage authors to submit original articles, reviews, short communications, and correspondence on all relevant themes and topics. EJPE is particularly committed to the publication of articles on important new clinical research that will have an immediate impact on clinical pediatric practice. The editorial office very much welcomes ideas for publications, whether individual articles or article series, that fit this goal and is always willing to address inquiries from authors regarding potential submissions. Invited review articles on clinical pediatrics that provide comprehensive coverage of a subject of importance are also regularly commissioned. The short publication time reflects both the commitment of the editors and publishers and their passion for new developments in the field of pediatrics. EJPE is active on social media (@EurJPediatrics) and we invite you to participate. EJPE is the official journal of the European Academy of Paediatrics (EAP) and publishes guidelines and statements in cooperation with the EAP.