Klassen Anne F, Dalton Louise, Goodacre Timothy E E, Harman Karen E, Slator Rona, Tsangaris Elena, Courtemanche Douglas J, Goldstein Jesse, Allen Gregory C, Mahony Aisling O, Riff Karen W Y Wong
Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
Spires Cleft Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, United Kingdom.
Cleft Palate Craniofac J. 2020 Jul;57(7):840-848. doi: 10.1177/1055665620902877. Epub 2020 Feb 12.
To describe the impact of completing the CLEFT-Q appearance scales on patients with cleft lip and/or palate and to identify demographic and clinical characteristics and CLEFT-Q scores associated with reporting a negative impact.
International cross-sectional survey.
Recruitment took place between October 2014 and November 2016 at 30 craniofacial clinics located in 12 countries.
Aged 8 to 29 years with cleft lip and/or palate.
MAIN OUTCOME MEASURE(S): Participants were asked 4 questions to evaluate the impact of completing the field test version of a patient-reported outcome measure (the CLEFT-Q) that included 154 items, of which 79 (51%) asked about appearance (of the face, nose, nostrils, teeth, lips, jaws, and cleft lip scar).
The sample included 2056 participants. Most participants liked answering the CLEFT-Q (88%) and the appearance questions (82%). After completing the appearance scales, most participants (77%) did not feel upset or unhappy about how they look, and they felt the same (67%) or better (23%) about their appearance after completing the questionnaire. Demographic and clinical variables associated with feeling unhappy/upset or worse about how they look included country of residence, female gender, more severe cleft, anticipating future cleft-specific surgeries, and reporting lower (ie, worse) scores on CLEFT-Q appearance and health-related quality-of-life scales.
Most participants liked completing the CLEFT-Q, but a small minority reported a negative impact. When used in clinical practice, CLEFT-Q scale scores should be examined as soon as possible after completion in order that the clinical team might identify patients who might require additional support.
描述完成唇腭裂患者容貌量表（CLEFT-Q）对唇裂和/或腭裂患者的影响，并确定与报告负面影响相关的人口统计学和临床特征以及CLEFT-Q评分。
国际横断面调查。
2014年10月至2016年11月期间，在12个国家的30家颅面诊所进行招募。
年龄在8至29岁之间的唇裂和/或腭裂患者。
向参与者询问4个问题，以评估完成一份患者报告结局量表（CLEFT-Q）现场测试版的影响，该量表包含154个项目，其中79项（51%）询问了容貌（面部、鼻子、鼻孔、牙齿、嘴唇、颌骨和唇裂瘢痕）。
样本包括2056名参与者。大多数参与者喜欢回答CLEFT-Q（88%）和容貌问题（82%）。完成容貌量表后，大多数参与者（77%）对自己的外貌并不感到沮丧或不满，并且在完成问卷后，他们对自己的外貌感觉相同（67%）或更好（23%）。与对自己外貌感到不开心/沮丧或感觉更差相关的人口统计学和临床变量包括居住国家、女性、更严重的腭裂、预期未来进行特定腭裂手术，以及在CLEFT-Q容貌和健康相关生活质量量表上报告较低（即较差）的分数。
大多数参与者喜欢完成CLEFT-Q，但一小部分人报告有负面影响。在临床实践中使用时，应在完成后尽快检查CLEFT-Q量表分数，以便临床团队能够识别可能需要额外支持的患者。
