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.	傅美華, 陳妍蓉. 學齡前唇腭裂患兒智商與父母文化程度相關性測查分析. 護理學雜志, 2004, 19(12): 63-64.
2.	劉秦仲, 陳錦文. 169 例唇腭裂患者智商調查分析. 中華口腔醫學雜志, 1996, 31(6): 332.
3.	陳振東, 陳京奕, 吳金環, 等. 影響唇腭裂患兒智能發育的因素. 華西口腔醫學雜志, 2001, 19(3): 174-177.
4.	周彥每. 發展性語言障礙兒童臨床診斷: 研究進路及損傷特征. 河南師范大學學報(哲學社會科學版), 2023, 50(1): 107-113.
5.	衛生部發布《中國出生缺陷防治報告(2012)》. 中國藥房, 2012, 23(39): 3693.
6.	國家統計局. 中國 2010-2022 年的人口出生率數據公告. 北京: 中國統計出版社, 2023.
7.	潘文雄, 熊奕. 早中孕期胎兒唇腭裂的產前超聲診斷研究進展. 中華超聲影像學雜志, 2022, 31(3): 272-277.
8.	劉師垚, 劉嘉昱, 陳麗先, 等. 我國唇腭裂患者及家屬心理干預模式芻議. 實用口腔醫學雜志, 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.	吳錕, 王琎, 趙越超. 居民家庭的過度負債: 度量與特征——來自中國家庭微觀調查數據的分析. 北京工商大學學報(社會科學版), 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.	吳幼平, 陳娜燕, 鐘曉紅. 產前超聲診斷胎兒唇腭裂的價值. 中國超聲醫學雜志, 2023, 39(4): 429-432.
16.	鄭晨晗, 季春亞, 殷林亮, 等. 早孕期(孕 11~13 +6 周)胎兒唇腭裂的超聲診斷. 中華超聲影像學雜, 2021, 30(8): 697-702.
17.	王斯悅, 彭和香, 薛恩慈, 等. 非綜合征型唇腭裂的遺傳預測模型研究進展. 中華流行病學雜志, 2023, 44(3): 504-510.
18.	孫嘉琳, 林巖松, 石冰, 等. 5 種常見綜合征型唇腭裂遺傳學研究進展. 國際口腔醫學雜志, 2021, 48(6): 718-724.
19.	馬曉芳, 黃永清, 石冰, 等. 雙生子模型在唇腭裂病因學研究中的應用. 國際口腔醫學雜志, 2021, 48(5): 512-519.
20.	黃國英. 中國出生缺陷防治研究存在的問題和對策. 上海醫學, 2017, 40(5): 260-262.
21.	王曉萌, 霍海英, 何灝逾, 等. 集體健康教育提高唇腭裂序列治療中患兒家屬對疾病認知和復診率的效果. 廣西醫學, 2022, 44(9): 1051-1053.
22.	李文君, 呂亞麗, 喬丹. 家屬協同管理模式對單側唇腭裂患兒鼻畸形整復術后治療依從性的影響. 中國美容醫學, 2022, 31(7): 164-167.

1. 傅美華, 陳妍蓉. 學齡前唇腭裂患兒智商與父母文化程度相關性測查分析. 護理學雜志, 2004, 19(12): 63-64.
2. 劉秦仲, 陳錦文. 169 例唇腭裂患者智商調查分析. 中華口腔醫學雜志, 1996, 31(6): 332.
3. 陳振東, 陳京奕, 吳金環, 等. 影響唇腭裂患兒智能發育的因素. 華西口腔醫學雜志, 2001, 19(3): 174-177.
4. 周彥每. 發展性語言障礙兒童臨床診斷: 研究進路及損傷特征. 河南師范大學學報(哲學社會科學版), 2023, 50(1): 107-113.
5. 衛生部發布《中國出生缺陷防治報告(2012)》. 中國藥房, 2012, 23(39): 3693.
6. 國家統計局. 中國 2010-2022 年的人口出生率數據公告. 北京: 中國統計出版社, 2023.
7. 潘文雄, 熊奕. 早中孕期胎兒唇腭裂的產前超聲診斷研究進展. 中華超聲影像學雜志, 2022, 31(3): 272-277.
8. 劉師垚, 劉嘉昱, 陳麗先, 等. 我國唇腭裂患者及家屬心理干預模式芻議. 實用口腔醫學雜志, 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. 吳錕, 王琎, 趙越超. 居民家庭的過度負債: 度量與特征——來自中國家庭微觀調查數據的分析. 北京工商大學學報(社會科學版), 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. 吳幼平, 陳娜燕, 鐘曉紅. 產前超聲診斷胎兒唇腭裂的價值. 中國超聲醫學雜志, 2023, 39(4): 429-432.
16. 鄭晨晗, 季春亞, 殷林亮, 等. 早孕期(孕 11~13 +6 周)胎兒唇腭裂的超聲診斷. 中華超聲影像學雜, 2021, 30(8): 697-702.
17. 王斯悅, 彭和香, 薛恩慈, 等. 非綜合征型唇腭裂的遺傳預測模型研究進展. 中華流行病學雜志, 2023, 44(3): 504-510.
18. 孫嘉琳, 林巖松, 石冰, 等. 5 種常見綜合征型唇腭裂遺傳學研究進展. 國際口腔醫學雜志, 2021, 48(6): 718-724.
19. 馬曉芳, 黃永清, 石冰, 等. 雙生子模型在唇腭裂病因學研究中的應用. 國際口腔醫學雜志, 2021, 48(5): 512-519.
20. 黃國英. 中國出生缺陷防治研究存在的問題和對策. 上海醫學, 2017, 40(5): 260-262.
21. 王曉萌, 霍海英, 何灝逾, 等. 集體健康教育提高唇腭裂序列治療中患兒家屬對疾病認知和復診率的效果. 廣西醫學, 2022, 44(9): 1051-1053.
22. 李文君, 呂亞麗, 喬丹. 家屬協同管理模式對單側唇腭裂患兒鼻畸形整復術后治療依從性的影響. 中國美容醫學, 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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