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完成面部差异儿童和青年的面部质量生活量表(FACE-Q)颅面部模块量表的影响:一项国际研究。

Impact of Completing FACE-Q Craniofacial Module Scales on Children and Young Adults with Facial Differences: An International Study.

作者信息

Gallo Lucas, Kamran Rakhshan, Rae Charlene, Deibert Shelby, Voineskos Sophocles H, Wong Riff Karen W Y, Klassen Anne F

机构信息

From the Division of Plastic Surgery, Department of Surgery.

Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences, University of Oxford.

出版信息

Plast Reconstr Surg. 2023 May 1;151(5):1063-1069. doi: 10.1097/PRS.0000000000010092. Epub 2022 Dec 21.

DOI:10.1097/PRS.0000000000010092
PMID:36729090
Abstract

BACKGROUND

The FACE-Q Craniofacial Module measures outcomes that matter to patients with diverse craniofacial conditions. However, it is not known whether completing a patient-reported outcome measure (PROM) has a negative impact on patients, particularly children. This study aims to investigate the impact of completing the FACE-Q Craniofacial Module and identify factors associated with a negative impact.

METHODS

Participants were between 8 and 29 years of age, had a facial difference, and completed at least one module of the FACE-Q Craniofacial Module as part of the international field-test study between December of 2016 and 2019. Participants were asked three questions: "Did you like or dislike answering this questionnaire?" "Did answering these questions change how you feel about how you look?" and "Did answering this questionnaire make you feel unhappy or happy?" Univariate and multivariable logistic regression analyses were used to evaluate variables associated with a negative response.

RESULTS

The sample included 927 participants. Most patients responded neutrally to all impact questions: 42.7% neither disliked nor liked the questionnaire; 76.6% felt the same about how they looked; and 72.7% felt neither unhappy nor happy after completion. Negative responses represented a small proportion of patients across all three impact questions (<13.2%). Increased craniofacial severity, more scales completed, and lower scores on all FACE-Q scales were associated with negative responses for all three impact questions ( P <0.01).

CONCLUSIONS

This study provides evidence that the FACE-Q Craniofacial Module is acceptable for most participants. Clinicians and study investigators should follow up with patients after completing this PROM to address areas of concern in scale scores.

CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, III.

摘要

背景

面部质量问卷(FACE-Q)颅面模块用于测量对患有各种颅面疾病的患者至关重要的结果。然而,尚不清楚完成患者报告结局测量(PROM)是否会对患者,尤其是儿童产生负面影响。本研究旨在调查完成FACE-Q颅面模块的影响,并确定与负面影响相关的因素。

方法

参与者年龄在8至29岁之间,存在面部差异,并在2016年12月至2019年期间作为国际现场测试研究的一部分完成了至少一个FACE-Q颅面模块。参与者被问到三个问题:“你喜欢还是不喜欢回答这份问卷?”“回答这些问题是否改变了你对自己外貌的看法?”以及“回答这份问卷让你感到不开心还是开心?”单因素和多因素逻辑回归分析用于评估与负面回答相关的变量。

结果

样本包括927名参与者。大多数患者对所有影响问题的回答为中性:42.7%既不讨厌也不喜欢问卷;76.6%对自己的外貌感觉相同;72.7%在完成后既不感到不开心也不感到开心。在所有三个影响问题中,负面回答的患者占比很小(<13.2%)。颅面严重程度增加、完成的量表更多以及所有FACE-Q量表得分较低与所有三个影响问题的负面回答相关(P<0.01)。

结论

本研究提供的证据表明,FACE-Q颅面模块对大多数参与者是可接受的。临床医生和研究调查人员在完成此PROM后应跟进患者,以解决量表得分中令人担忧的领域。

临床问题/证据水平:风险,III级

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