From the Division of Plastic and Reconstructive Surgery, Department of Surgery, Hospital for Sick Children, University of Toronto; the Departments of Pediatrics, Surgery, and Health Research Methods, Evidence and Impact, McMaster University; the Spires Cleft Center, Oxford University Hospitals NHS Foundation Trust; the Department of Otolaryngology-Head and Neck Surgery, University of Colorado School of Medicine; the Division of Plastic Surgery, Department of Surgery, University of British Columbia, BC Children's Hospital; the Department of Plastic Surgery, University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh; the National Maxillofacial Unit, St. James' Hospital; the Department of Plastic and Reconstructive Surgery, Memorial Sloan Kettering Cancer Center; West Midlands Cleft Service, Birmingham Children's Hospital; and Fundación Operación Sonrisa Colombia and Division of Plastic Surgery, Universidad el Bosque.
Plast Reconstr Surg. 2019 Jul;144(1):78e-88e. doi: 10.1097/PRS.0000000000005723.
Measuring the patient perspective is important in evaluating outcomes of cleft care. Understanding how treatment outcomes vary depending on cleft type may allow for better planning of treatments, setting of expectations, and more accurate benchmarking efforts. The CLEFT-Q is a patient-reported outcome measure for patients with cleft lip and/or palate.
The 12 CLEFT-Q scales measuring appearance (i.e., face, nose, nostrils, lips, cleft lip scar, teeth, and jaws), function (i.e., speech), and health-related quality of life (i.e., psychological, school, social, and speech-related distress) were field tested in a cross-sectional study in 30 centers in 12 countries. Patients with cleft lip and/or cleft palate aged 8 to 29 years were recruited from clinical settings. Differences in CLEFT-Q scores by cleft subtypes were evaluated using one-way analysis of variance or Kruskal-Wallis H tests, with Tukey or Dunn procedure with Bonferroni corrections post hoc analyses, respectively. Scores are presented using radar charts to visualize all outcomes simultaneously.
The field test included 2434 patients. Scores on all CLEFT-Q scales varied significantly with cleft subtype. Patients with unilateral or bilateral cleft lip and/or palate scored lower on all appearance scales compared with patients with cleft palate or unilateral incomplete cleft lip. Scores on the speech function and speech-related distress scales decreased with each progressive group in the Veau classification. Patients with complete bilateral cleft lip and palate scored lowest on the social, school, and psychological scales.
Patient-reported outcomes measured with the CLEFT-Q vary significantly with cleft type. Visualizing multiple outcomes simultaneously with radar charts allows for an understanding of a patient's overall status in a single graph.
评估唇腭裂治疗效果时,衡量患者感受至关重要。了解不同类型的唇腭裂治疗效果的差异,有助于更好地规划治疗方案、设定预期,并进行更准确的基准测试。CLEFT-Q 是一种用于评估唇裂和/或腭裂患者的患者报告结局(PRO)量表。
在 12 个国家的 30 个中心进行的横断面研究中,对 12 个 CLEFT-Q 量表(分别评估外观[即面部、鼻子、鼻孔、嘴唇、唇裂瘢痕、牙齿和颌骨]、功能[即言语]和健康相关生活质量[即心理、学校、社会和言语相关困扰])进行了现场测试。在临床环境中招募了年龄在 8 至 29 岁的唇裂和/或腭裂患者。使用单因素方差分析或 Kruskal-Wallis H 检验评估不同 CLEFT-Q 量表评分与唇腭裂亚型之间的差异,分别采用 Tukey 或 Dunn 程序与 Bonferroni 校正事后分析。采用雷达图呈现评分,以便同时可视化所有结果。
现场测试共纳入 2434 例患者。所有 CLEFT-Q 量表评分均与唇腭裂亚型显著相关。与腭裂或单侧不完全唇裂患者相比,单侧或双侧唇裂和/或腭裂患者在所有外观量表上的评分均较低。在 Veau 分类中,随着每一级别的递进,言语功能和言语相关困扰量表的评分逐渐下降。完全性双侧唇腭裂患者在社会、学校和心理量表上的评分最低。
通过 CLEFT-Q 评估的患者报告结局与唇腭裂类型差异显著。使用雷达图同时可视化多个结果,可以在单个图表中了解患者的整体状况。