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川崎病病史青少年和年轻成人的健康相关生活质量。

Health-related quality of life in adolescents and young adults with a history of Kawasaki disease.

机构信息

Department of Pediatrics, Kurume University School of Medicine, Kurume, Japan.

出版信息

J Pediatr. 2010 Mar;156(3):439-43. doi: 10.1016/j.jpeds.2009.09.041. Epub 2009 Dec 6.

Abstract

OBJECTIVE

To investigate the health-related quality of life (HRQOL) in adolescents and young adults with Kawasaki disease (KD).

STUDY DESIGN

We conducted a cross-sectional observational study. Patients were eligible for this study when they were > or =16 years of age and had received a diagnosis of KD > or =5 years before the start of this study. The patients were divided in 3 groups according to their coronary status: normal, aneurysms, and giant aneurysms/ischemia. A self-administered questionnaire (Medical Outcome Study Short Form 36) was mailed to the patients to evaluate the HRQOL.

RESULTS

Of 624 total questionnaires mailed, 377 were delivered, and 250 were returned. The response rates of the normal, aneurysm, and giant aneurysms/ischemia groups were 33%, 62%, and 72% of all eligible patients, respectively. All subscale scoress of HRQOL, except vitality and role-emotional (limitations in the usual role activities because of emotional problems) in patients with KD were significantly higher than scores from the national norms.

CONCLUSIONS

The HRQOL of adolescents and young adults with a history of KD is favorable. However, long-term follow-up is necessary, because the general health perceptions of older patients tended to be lower.

摘要

目的

调查川崎病(KD)青少年和年轻患者的健康相关生活质量(HRQOL)。

研究设计

我们进行了一项横断面观察性研究。当患者年龄≥16 岁且在本研究开始前≥5 年被诊断为 KD 时,他们有资格参加本研究。根据冠状动脉状况,患者分为 3 组:正常、动脉瘤和巨大动脉瘤/缺血。我们向患者邮寄了一份自我管理问卷(医疗结果研究短表 36),以评估 HRQOL。

结果

共邮寄了 624 份问卷,其中 377 份送达,250 份返回。正常组、动脉瘤组和巨大动脉瘤/缺血组的应答率分别为所有合格患者的 33%、62%和 72%。除川崎病患者的活力和角色情感(因情绪问题而限制通常的角色活动)外,所有 HRQOL 子量表评分均显著高于全国正常评分。

结论

有 KD 病史的青少年和年轻患者的 HRQOL 良好。然而,需要进行长期随访,因为年长患者的总体健康感知往往较低。

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