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成年腭裂患者:功能需求与治疗障碍的探索

Adult Cleft Patients: An Exploration of Functional Needs and Treatment Barriers.

作者信息

Braun Sterling E, O'Connor Michaela K, Garg Ravi K

机构信息

Department of Plastic Surgery, University of Kansas Medical Center.

University of Kansas School of Medicine, Kansas City, KS.

出版信息

J Craniofac Surg. 2023;34(1):332-336. doi: 10.1097/SCS.0000000000008931. Epub 2022 Aug 19.


DOI:10.1097/SCS.0000000000008931
PMID:35984002
Abstract

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.

摘要

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。

相似文献

[1]
Adult Cleft Patients: An Exploration of Functional Needs and Treatment Barriers.

J Craniofac Surg. 2023

[2]
Nasal Obstruction in Children With Cleft Lip and Palate: Results of a Cross-Sectional Study Utilizing the NOSE Scale.

Cleft Palate Craniofac J. 2019-2

[3]
Nasal Airway Dysfunction in Children with Cleft Lip and Cleft Palate: Results of a Cross-Sectional Population-Based Study, with Anatomical and Surgical Considerations.

Plast Reconstr Surg. 2016-12

[4]
Initial size of cleft does not correlate with size and function of nasal airway in adults with unilateral cleft lip and palate.

J Plast Surg Hand Surg. 2011-6

[5]
Nasal symptoms and clinical findings in adult patients treated for unilateral cleft lip and palate.

J Plast Surg Hand Surg. 2013-10

[6]
Long-Term Patient-Reported Outcomes in Internationally Adopted Children with Cleft Lip and Palate.

Cleft Palate Craniofac J. 2025-1

[7]
EDITOR'S CHOICE: objective assessment of the nasal airway in unilateral cleft lip and palate--a long-term study.

Cleft Palate Craniofac J. 2010-5

[8]
Number of Surgical Procedures for Patients With Cleft lip and Palate From Birth to 21 Years Old at a Single Children's Hospital.

Ann Plast Surg. 2016-5

[9]
Comparative effectiveness studies examining patient-reported outcomes among children with cleft lip and/or palate: a systematic review.

Plast Reconstr Surg. 2015-1

[10]
Outcome of patients with cleft lip and cleft palate operated at Mahosoth, Mitthaphab and Setthathirath Hospitals in Lao People's Democratic Republic.

J Med Assoc Thai. 2013-9

引用本文的文献

[1]
Speech Therapy in an Adult With Cleft Lip and Palate: A Clinical Case Study.

Perspect ASHA Spec Interest Groups. 2025-6-30

[2]
Self-Identified Employment Challenges for Young Adults with a Cleft Lip and Palate: A Qualitative Exploration.

Behav Sci (Basel). 2025-1-20

[3]
Nasal airway obstruction in patients with cleft lip nasal deformity: A systematic review.

J Plast Reconstr Aesthet Surg. 2024-5

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