Introduction

Kawasaki disease (KD) with coronary artery aneurysms (complex KD) presents relentless challenges for families. Psychosocial experiences and needs were explored.

Method

A descriptive, exploratory study of adolescents and parents using a needs survey and psychosocial instruments (anxiety, depression, and functional impairment).

Results

Fifty-one parents and 38 adolescents participated. Predominant interests were for information sheets, newsletters, Web sites, and phone applications. Gaps in disease-specific knowledge and awareness of coronary artery aneurysms between parents and adolescents were identified. Psychosocial concerns for adolescents included symptoms of anxiety (22%), depression (13%), and functional impairment (22%). Multivariable analyses indicated higher depression scores associated with longer travel distance from specialists (p = .04). Parent-reported social concerns for their adolescent were associated with higher anxiety (p = .005) and functional impairment (p = .005). Written commentary complemented the findings.

Discussion

Care protocols require psychosocial assessment/referral and the use of virtual platforms. The groundwork was laid for developing patient and family-centered strategies.

中文翻译：

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了解患有川崎病和冠状动脉瘤的父母和青少年的教育支持和社会心理需求

介绍

川崎病 (KD) 合并冠状动脉瘤（复杂性 KD）给家庭带来了无情的挑战。探讨了社会心理体验和需求。

方法

一项使用需求调查和社会心理工具（焦虑、抑郁和功能障碍）对青少年和父母进行的描述性探索性研究。

结果

51 名家长和 38 名青少年参加。主要兴趣是信息表、时事通讯、网站和电话应用程序。确定了父母和青少年之间在疾病特异性知识和冠状动脉瘤认识方面的差距。青少年的社会心理问题包括焦虑症状（22%）、抑郁（13%）和功能障碍（22%）。多变量分析表明，较高的抑郁评分与与专家的较长旅行距离相关（p = .04）。父母报告的青少年社会问题与较高的焦虑 ( p = .005) 和功能障碍 ( p = .005) 相关。书面评论补充了调查结果。

讨论

护理协议需要心理社会评估/转诊和使用虚拟平台。为制定以患者和家庭为中心的策略奠定了基础。