Investigation analysis of current status of adult cleft lip and palate patients and social perception of cleft lip and palate in the Chinese Mainland_West China Medical Journal

Authors：

CHEN Lixian , WANG Dan , WANG Jue , SHI Bing ,  LI Chenghao

State Key Laboratory of Oral Diseases & National Clinical Research Center for Oral Diseases & Department of Cleft Lip and Palate Surgery, West China Hospital of Stomatology, Sichuan University, Chengdu, Sichuan 610041, P. R. China;

Corresponding author：

LI Chenghao, Email: leechenghao_cn@163.com

Keywords：

Cleft lip and palate; social perception; prenatal diagnosis; prognosis; decision making

DOI：

10.7507/1002-0179.202404267

Video：

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Objective To investigate the basic status of adult cleft lip and palate patients and the social perception of different populations towards cleft lip and palate diseases in the Chinese Mainland, and provide a scientific basis for further improving the public awareness of cleft lip and palate diseases. Methods A questionnaire survey on basic demographic information was conducted among cleft lip and palate patients who were aged 18 or above and received diagnosis and treatment in the Department of Cleft Lip and Palate Surgery, West China Hospital of Stomatology, Sichuan University between January 2022 and October 2023. Simultaneously, another questionnaire survey was conducted among cleft lip and palate specialists, genetic and prenatal counsellors, ultrasound staff, general medical staff, families of cleft lip and palate patients, and the general population, to investigate their level of knowledge regarding prenatal diagnosis, treatment, and prognosis of cleft lip and palate, as well as their corresponding decision-making choices. Results A total of 489 copies of questionnaire were distributed to patients with cleft lip and palate who were 18 years old or above, and 440 valid copies were collected, with an effective response rate of 90.0%. Among the 440 patients, 90.0% were aged 18-30 years, 57.7% were males, 65.7% were residing within Sichuan Province, 53.8% had an associate degree, bachelor’s degree or above, 71.6% had no fixed occupation, 75.0% had siblings, and 86.8% had a monthly family income of ≤10000 yuan. In terms of the questionnaire on social perception of cleft lip and palate among different populations, a total of 1513 copies of questionnaire were collected, among which 1437 were valid copies, with an effective response rate of 95.0%. There was no statistically significant difference (P>0.05) in the understanding and perception among different populations regarding the questions “Does cleft lip and palate affect the quality of life and future development of affected children?” or “Do you think families of children with cleft lip and palate experience significant pressure?”, while there were statistically significant differences (P<0.05) in the understanding and perception of the remaining eight questions. Conclusions People with cleft lip and palate have certain difficulties in employment and need more attention and help from the society. There are differences in social perception related to cleft lip and palate among different groups of people.

Citation： CHEN Lixian, WANG Dan, WANG Jue, SHI Bing, LI Chenghao. Investigation analysis of current status of adult cleft lip and palate patients and social perception of cleft lip and palate in the Chinese Mainland. West China Medical Journal, 2025, 40(1): 29-34. doi: 10.7507/1002-0179.202404267 Copy

1.	傅美华, 陈妍蓉. 学龄前唇腭裂患儿智商与父母文化程度相关性测查分析. 护理学杂志, 2004, 19(12): 63-64.
2.	刘秦仲, 陈锦文. 169 例唇腭裂患者智商调查分析. 中华口腔医学杂志, 1996, 31(6): 332.
3.	陈振东, 陈京奕, 吴金环, 等. 影响唇腭裂患儿智能发育的因素. 华西口腔医学杂志, 2001, 19(3): 174-177.
4.	周彦每. 发展性语言障碍儿童临床诊断: 研究进路及损伤特征. 河南师范大学学报(哲学社会科学版), 2023, 50(1): 107-113.
5.	卫生部发布《中国出生缺陷防治报告(2012)》. 中国药房, 2012, 23(39): 3693.
6.	国家统计局. 中国 2010-2022 年的人口出生率数据公告. 北京: 中国统计出版社, 2023.
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10.	Demir T, Karacetin G, Baghaki S, et al. Psychiatric assessment of children with nonsyndromic cleft lip and palate. Gen Hosp Psychiatry, 2011, 33(6): 594-603.
11.	Snyder H, Pope AW. Psychosocial adjustment in children and adolescents with a craniofacial anomaly: diagnosis-specific patterns. Cleft Palate Craniofac J, 2010, 47(3): 264-272.
12.	Feragen KB, Stock NM, Kvalem IL. Risk and protective factors at age 16: psychological adjustment in children with a cleft lip and/or palate. Cleft Palate Craniofac J, 2015, 52(5): 555-573.
13.	吴锟, 王琎, 赵越超. 居民家庭的过度负债: 度量与特征——来自中国家庭微观调查数据的分析. 北京工商大学学报(社会科学版), 2020, 35(4): 103-114.
14.	Shaikh D, Mercer NS, Sohan K, et al. Prenatal diagnosis of cleft lip and palate. Br J Plast Surg, 2001, 54(4): 288-289.
15.	吴幼平, 陈娜燕, 钟晓红. 产前超声诊断胎儿唇腭裂的价值. 中国超声医学杂志, 2023, 39(4): 429-432.
16.	郑晨晗, 季春亚, 殷林亮, 等. 早孕期(孕 11~13 +6 周)胎儿唇腭裂的超声诊断. 中华超声影像学杂, 2021, 30(8): 697-702.
17.	王斯悦, 彭和香, 薛恩慈, 等. 非综合征型唇腭裂的遗传预测模型研究进展. 中华流行病学杂志, 2023, 44(3): 504-510.
18.	孙嘉琳, 林岩松, 石冰, 等. 5 种常见综合征型唇腭裂遗传学研究进展. 国际口腔医学杂志, 2021, 48(6): 718-724.
19.	马晓芳, 黄永清, 石冰, 等. 双生子模型在唇腭裂病因学研究中的应用. 国际口腔医学杂志, 2021, 48(5): 512-519.
20.	黄国英. 中国出生缺陷防治研究存在的问题和对策. 上海医学, 2017, 40(5): 260-262.
21.	王晓萌, 霍海英, 何灏逾, 等. 集体健康教育提高唇腭裂序列治疗中患儿家属对疾病认知和复诊率的效果. 广西医学, 2022, 44(9): 1051-1053.
22.	李文君, 吕亚丽, 乔丹. 家属协同管理模式对单侧唇腭裂患儿鼻畸形整复术后治疗依从性的影响. 中国美容医学, 2022, 31(7): 164-167.

1. 傅美华, 陈妍蓉. 学龄前唇腭裂患儿智商与父母文化程度相关性测查分析. 护理学杂志, 2004, 19(12): 63-64.
2. 刘秦仲, 陈锦文. 169 例唇腭裂患者智商调查分析. 中华口腔医学杂志, 1996, 31(6): 332.
3. 陈振东, 陈京奕, 吴金环, 等. 影响唇腭裂患儿智能发育的因素. 华西口腔医学杂志, 2001, 19(3): 174-177.
4. 周彦每. 发展性语言障碍儿童临床诊断: 研究进路及损伤特征. 河南师范大学学报(哲学社会科学版), 2023, 50(1): 107-113.
5. 卫生部发布《中国出生缺陷防治报告(2012)》. 中国药房, 2012, 23(39): 3693.
6. 国家统计局. 中国 2010-2022 年的人口出生率数据公告. 北京: 中国统计出版社, 2023.
7. 潘文雄, 熊奕. 早中孕期胎儿唇腭裂的产前超声诊断研究进展. 中华超声影像学杂志, 2022, 31(3): 272-277.
8. 刘师垚, 刘嘉昱, 陈丽先, 等. 我国唇腭裂患者及家属心理干预模式刍议. 实用口腔医学杂志, 2023, 39(3): 390-395.
9. Stock NM, Costa B, White P, et al. Risk and protective factors for psychological distress in families following a diagnosis of cleft lip and/or palate. Cleft Palate Craniofac J, 2020, 57(1): 88-98.
10. Demir T, Karacetin G, Baghaki S, et al. Psychiatric assessment of children with nonsyndromic cleft lip and palate. Gen Hosp Psychiatry, 2011, 33(6): 594-603.
11. Snyder H, Pope AW. Psychosocial adjustment in children and adolescents with a craniofacial anomaly: diagnosis-specific patterns. Cleft Palate Craniofac J, 2010, 47(3): 264-272.
12. Feragen KB, Stock NM, Kvalem IL. Risk and protective factors at age 16: psychological adjustment in children with a cleft lip and/or palate. Cleft Palate Craniofac J, 2015, 52(5): 555-573.
13. 吴锟, 王琎, 赵越超. 居民家庭的过度负债: 度量与特征——来自中国家庭微观调查数据的分析. 北京工商大学学报(社会科学版), 2020, 35(4): 103-114.
14. Shaikh D, Mercer NS, Sohan K, et al. Prenatal diagnosis of cleft lip and palate. Br J Plast Surg, 2001, 54(4): 288-289.
15. 吴幼平, 陈娜燕, 钟晓红. 产前超声诊断胎儿唇腭裂的价值. 中国超声医学杂志, 2023, 39(4): 429-432.
16. 郑晨晗, 季春亚, 殷林亮, 等. 早孕期(孕 11~13 +6 周)胎儿唇腭裂的超声诊断. 中华超声影像学杂, 2021, 30(8): 697-702.
17. 王斯悦, 彭和香, 薛恩慈, 等. 非综合征型唇腭裂的遗传预测模型研究进展. 中华流行病学杂志, 2023, 44(3): 504-510.
18. 孙嘉琳, 林岩松, 石冰, 等. 5 种常见综合征型唇腭裂遗传学研究进展. 国际口腔医学杂志, 2021, 48(6): 718-724.
19. 马晓芳, 黄永清, 石冰, 等. 双生子模型在唇腭裂病因学研究中的应用. 国际口腔医学杂志, 2021, 48(5): 512-519.
20. 黄国英. 中国出生缺陷防治研究存在的问题和对策. 上海医学, 2017, 40(5): 260-262.
21. 王晓萌, 霍海英, 何灏逾, 等. 集体健康教育提高唇腭裂序列治疗中患儿家属对疾病认知和复诊率的效果. 广西医学, 2022, 44(9): 1051-1053.
22. 李文君, 吕亚丽, 乔丹. 家属协同管理模式对单侧唇腭裂患儿鼻畸形整复术后治疗依从性的影响. 中国美容医学, 2022, 31(7): 164-167.

West China Medical Journal

Investigation analysis of current status of adult cleft lip and palate patients and social perception of cleft lip and palate in the Chinese Mainland

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