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接受非综合征性颅缝早闭治疗的儿童的健康相关生活质量。

Health-related quality of life of children treated for non-syndromic craniosynostosis.

作者信息

Kljajić Marizela, Maltese Giovanni, Tarnow Peter, Sand Peter, Kölby Lars

机构信息

Department of Plastic Surgery, Institute of Clinical Sciences, Sahlgrenska Academy, Gothenburg University, Sahlgrenska University Hospital, Gothenburg, Sweden.

Department of Psychiatry and Neurochemistry, Institute of Neuroscience and Physiology, Sahlgrenska Academy, Gothenburg University, Sahlgrenska University Hospital, Gothenburg, Sweden.

出版信息

J Plast Surg Hand Surg. 2023 Feb-Dec;57(1-6):408-414. doi: 10.1080/2000656X.2022.2147532. Epub 2022 Nov 21.

Abstract

Health-related quality of life (HRQoL) allows the acquisition of the subjective perspective of patients regarding their health and function; yet a very few studies have been evaluated HRQoL of patients treated for craniosynostosis (CS). In this retrospective, descriptive cohort study, school-aged children (7-16 years) treated for non-syndromic CS were assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales. Seventy-three patients and their parents responded to the PedsQL (response rate: 80.2%). Patients generally estimated average HRQoL with no difference compared to the normal population sample. Further, no difference in HRQoL was found between treated sagittal (SS) or metopic synostosis. In the SS group, surgical methods involving spring-assisted surgery and pi-plasty were unrelated to HRQoL outcomes. Additionally, HRQoL was highly correlated with intelligence quotient (IQ,  = 0.42;  = 0.0004) and adaptive behavior skills (ABAS,  = 0.57;  = 0.0001). Furthermore, differences were observed in estimated physical function ( = 0.002) and school function ( = 0.012) between self- and proxy reports ( parents estimated child HRQoL as higher than did the children). Children treated for CS have a generally average HRQoL, and neither CS type nor surgical method influenced HRQoL outcomes. Moreover, children and parents estimated HRQoL differently, suggesting the importance of using both self- and proxy reporting in patient-reported measures. HRQoL was strongly related to IQ and ABAS, indicating that the PedsQL can be used as a screening instrument to identify craniofacial patients in need of further psychological assessment.

摘要

健康相关生活质量(HRQoL)能够获取患者对自身健康和功能的主观看法;然而,极少有研究评估过接受颅缝早闭(CS)治疗的患者的HRQoL。在这项回顾性描述性队列研究中,使用儿童生活质量量表(PedsQL)4.0通用核心量表对接受非综合征性CS治疗的学龄儿童(7至16岁)进行了评估。73名患者及其父母对PedsQL做出了回应(回应率:80.2%)。患者普遍估计其平均HRQoL与正常人群样本相比无差异。此外,在接受矢状缝早闭(SS)或额缝早闭治疗的患者之间,未发现HRQoL存在差异。在SS组中,涉及弹簧辅助手术和π成形术的手术方法与HRQoL结果无关。此外,HRQoL与智商(IQ,r = 0.42;P = 0.0004)和适应性行为技能(ABAS,r = 0.57;P = 0.0001)高度相关。此外,在自我报告和代理报告(父母估计孩子的HRQoL高于孩子自己的估计)之间,在估计的身体功能(P = 0.002)和学校功能(P = 0.012)方面观察到了差异。接受CS治疗的儿童总体上HRQoL处于平均水平,CS类型和手术方法均未影响HRQoL结果。此外,儿童和父母对HRQoL的估计不同,这表明在患者报告测量中同时使用自我报告和代理报告的重要性。HRQoL与IQ和ABAS密切相关,表明PedsQL可作为一种筛查工具,用于识别需要进一步心理评估的颅面患者。

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