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采用新开发的李克特量表评估小耳畸形伴或不伴颅面短小患儿及其照顾者对面部外观的看法。

Child and Caregiver Perspectives Towards Facial Appearance in Children With Microtia With or Without Craniofacial Microsomia Using a Newly Developed Likert Scale.

机构信息

University of Illinois at Chicago College of Medicine.

Division of Transplant Surgery, Departmental Affiliate, Division of Epidemiology & Biostatistics, University of Illinois at Chicago Medical Center.

出版信息

J Craniofac Surg. 2020 Sep;31(6):1583-1587. doi: 10.1097/SCS.0000000000006468.

DOI:10.1097/SCS.0000000000006468
PMID:32310885
Abstract

Craniofacial microsomia (CFM) is the second most common congenital craniofacial malformation characterized by asymmetric malformation of the ear and mandible. Numerous studies have reported the importance of child perspective and psychosocial issues in patients with craniofacial abnormalities. However, clinical tools to evaluate child and caregiver perspectives in patients with microtia with or without CFM have been limited or not reported in the literature. The authors aimed to (1) To develop a tool for measuring patient and caregiver evaluation of facial appearance as it relates to microtia and craniofacial microsomia (CFM). (2) To utilize this tool in comparing children, between 7 and 20 years of age, and caregiver perspectives towards facial appearance in patients with microtia with or without craniofacial microsomia (CFM). A prospective single center study conducted from 2016 to 2017 using newly developed 13-item (Microtia) and 27-item (CFM) 5-point Likert scale Likert scale questionnaires given to patients with CFM and caregivers at a craniofacial center. Aged 7 to 20 (N = 25) and their caregivers. A total of 25 patients (13 male, 12 female; mean age at time of survey 13.2 ± 3.7) met criteria for the study. The Likert scale developed and presented in this study may be a useful tool for clinical use in investigating patient and caregiver perspectives for planning surgical timeline. Based on our pilot data it is important to incorporate all voices into decision-making on timing.

摘要

颅面短小症(CFM)是第二常见的先天性颅面畸形,其特征为耳和下颌骨的不对称畸形。许多研究报告了在颅面畸形患者中,儿童视角和心理社会问题的重要性。然而,用于评估小耳畸形伴或不伴 CFM 患者的儿童和照顾者观点的临床工具在文献中受到限制或未被报道。作者旨在:(1) 开发一种用于测量患者和照顾者对面部外观评估的工具,因为它与小耳畸形和颅面短小症(CFM)有关。(2) 利用该工具比较 7 至 20 岁之间的儿童和照顾者对小耳畸形伴或不伴 CFM 患者的面部外观的看法。这是一项前瞻性单中心研究,于 2016 年至 2017 年在颅面中心进行,使用新开发的 13 项(小耳畸形)和 27 项(CFM)5 点李克特量表问卷对 CFM 患者及其照顾者进行评估。年龄在 7 至 20 岁之间(N = 25)及其照顾者。共有 25 名患者(13 名男性,12 名女性;调查时的平均年龄为 13.2±3.7)符合研究标准。本研究中开发和提出的李克特量表可能是一种有用的临床工具,可用于调查患者和照顾者对手术时间安排的看法。根据我们的初步数据,将所有声音纳入决策制定时间非常重要。

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Child and Caregiver Perspectives Towards Facial Appearance in Children With Microtia With or Without Craniofacial Microsomia Using a Newly Developed Likert Scale.采用新开发的李克特量表评估小耳畸形伴或不伴颅面短小患儿及其照顾者对面部外观的看法。
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引用本文的文献

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Metabolomic characterization of congenital microtia: a possible analysis for early diagnosis.先天性小耳畸形的代谢组学特征:早期诊断的一种可能分析方法。
Ann Transl Med. 2022 Dec;10(24):1330. doi: 10.21037/atm-22-5614.
2
Psychosocial and Health-Related Experiences of Individuals With Microtia and Craniofacial Microsomia and Their Families: Narrative Review Over 2 Decades.个体患有小耳畸形和颅面骨发育不全及其家庭的心理社会和健康相关体验:20 多年来的叙述性综述。
Cleft Palate Craniofac J. 2023 Sep;60(9):1090-1112. doi: 10.1177/10556656221091699. Epub 2022 Apr 5.