Michael G. DeGroote School of Medicine, 3710McMaster University, Hamilton, Ontario, Canada.
Department of Psychology, 7938University of Toronto, Toronto, Ontario, Canada.
Cleft Palate Craniofac J. 2021 Aug;58(8):1020-1031. doi: 10.1177/1055665620969589. Epub 2020 Nov 6.
The concepts important to children and young adults who undergo treatments for facial differences are not well-defined. Measurement of treatment outcomes from the patient's perspective is necessary to ensure goals of treatment are met. We aimed to identify concepts important to children and young adults with facial differences through a qualitative study.
An interpretive description qualitative approach was followed. Semistructured interviews were conducted, transcribed verbatim, and coded using a line-by-line approach. Qualitative analysis led to the development of a conceptual framework of outcomes important to patients.
Interviews were conducted in Canada and the United Kingdom at home, by telephone, or in the hospital.
Participants (N = 72) were recruited between May and June 2014 from craniofacial clinics at the Hospital for Sick Children (Toronto) and Great Ormond Street Hospital (London). Participants included anyone with a visible and/or functional facial difference aged 8 to 29 years and fluent in English, excluding patients with a cleft. The sample included 38 females and 34 males, with a mean age of 13.9 years, and included 28 facial conditions (11 facial paralysis, 18 ear anomalies, 26 skeletal conditions, and 17 soft tissue conditions).
Analysis led to identification of important concepts within 4 overarching domains: facial appearance, facial function, adverse effects of treatment, and health-related quality of life (psychological, social, and school function).
Our study provides an understanding of concepts important to children and young adults with facial differences.
接受面部差异治疗的儿童和青少年重视的概念尚未明确定义。从患者角度衡量治疗结果对于确保治疗目标的实现至关重要。我们旨在通过定性研究确定面部差异儿童和青少年重视的概念。
采用解释性描述性定性方法。进行半结构式访谈，逐行转录并进行编码。定性分析导致形成了对患者重要的结果概念框架。
访谈于 2014 年 5 月至 6 月在加拿大和英国的家中、通过电话或在医院进行。
参与者（N=72）于 2014 年 5 月至 6 月从 Sick Kids 医院（多伦多）和大奥蒙德街医院（伦敦）的颅面诊所招募。参与者包括任何有可见和/或功能面部差异且年龄在 8 至 29 岁之间、英语流利的人，但不包括有唇裂的患者。该样本包括 38 名女性和 34 名男性，平均年龄为 13.9 岁，包括 28 种面部状况（11 种面瘫，18 种耳部异常，26 种骨骼状况和 17 种软组织状况）。
分析导致在 4 个总体领域内确定了重要概念：面部外观，面部功能，治疗的不良反应以及与健康相关的生活质量（心理，社会和学校功能）。
我们的研究提供了对有面部差异的儿童和青少年重视的概念的理解。
