Braun Sterling E, O'Connor Michaela K, Garg Ravi K
Department of Plastic Surgery, University of Kansas Medical Center.
University of Kansas School of Medicine, Kansas City, KS.
J Craniofac Surg. 2023;34(1):332-336. doi: 10.1097/SCS.0000000000008931. Epub 2022 Aug 19.
BACKGROUND: Management of cleft lip and palate has been well characterized in pediatric patients, but limited data exist regarding the long-term functional outcomes of cleft patients once they reach adulthood. MATERIALS AND METHODS: An institutional, cross-sectional survey of adult patients with a history of cleft lip and/or palate was performed. The survey recorded patient characteristics, concerns, and barriers to care. Patient-reported outcome measures were assessed using the Nasal Obstruction Symptom Evaluation Scale, Epworth Sleepiness Scale, Mandibular Function Impairment Questionnaire, and the CLEFT-Q Speech Modules. RESULTS: A total of 63 patients (18.2%) participated in the survey. The mean patient age was 43.7 years (median: 41 y, range: 19-93 y), and the most common diagnosis was cleft lip and palate (51%) followed by isolated cleft palate (35%) and isolated cleft lip (14%). A subset of patients scored with moderate to severe dysfunction on each outcome measure including the Nasal Obstruction Symptom Evaluation Instrument (59%), Epworth Sleepiness Scale (7%), and Mandibular Function Impairment Questionnaire (13%). Respondent scores on the CLEFT-Q Speech modules demonstrated a bimodal distribution with lower scores in a significant subset of patients with cleft palate and cleft lip and palate. Many respondents (41%) were interested in clinical evaluation but cited barriers to seeking treatment including financial barriers (35%) or lack awareness of clinical options (27%). CONCLUSIONS: Many cleft patients have persistent needs or concerns in adulthood, especially regarding speech and nasal breathing. Systemic barriers pose challenges to these patients undergoing clinical evaluation.
背景:唇腭裂的治疗在儿科患者中已有充分描述,但关于腭裂患者成年后的长期功能结局的数据有限。 材料与方法:对有唇裂和/或腭裂病史的成年患者进行了一项机构横断面调查。该调查记录了患者的特征、关注点和护理障碍。使用鼻阻塞症状评估量表、爱泼华嗜睡量表、下颌功能障碍问卷和腭裂问卷语音模块评估患者报告的结局指标。 结果:共有63名患者(18.2%)参与了调查。患者的平均年龄为43.7岁(中位数:41岁,范围:19 - 93岁),最常见的诊断是唇腭裂(51%),其次是孤立性腭裂(35%)和孤立性唇裂(14%)。在包括鼻阻塞症状评估工具(59%)、爱泼华嗜睡量表(7%)和下颌功能障碍问卷(13%)在内的每项结局指标上,一部分患者的功能障碍评分为中度至重度。腭裂问卷语音模块的受访者得分呈双峰分布,在相当一部分腭裂和唇腭裂患者中得分较低。许多受访者(41%)对临床评估感兴趣,但提到寻求治疗存在障碍,包括经济障碍(35%)或对临床选择缺乏了解(27%)。 结论:许多腭裂患者在成年后仍有持续的需求或担忧,尤其是在言语和鼻呼吸方面。系统性障碍给这些患者接受临床评估带来了挑战。
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