Dominic J Romeo, Leigh Friedman, Manisha Banala, Carlos E Barrero, Benjamin B Massenburg, Jinggang J Ng, Meagan Wu, Leanne Magee, Jordan W Swanson, Jesse A Taylor, Scott P Bartlett
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This study compares QOL in adults with CFM to a comparative group using a validated questionnaire.DesignCross-sectional.SettingTertiary care center.Patients, ParticipantsAdults aged 18 years or older with CFM were contacted and administered the World Health Organization (WHO) QOL Biomedical Research and Educating Foundation questionnaire.Main Outcome Measure(s)Quality of life in adults with CFM.ResultsOne hundred and fourteen patients met inclusion criteria, 40 (35.1%) were successfully contacted, and 28 (24.6%) completed the questionnaire in 8.6 ± 2.6 min. Respondents were 23.3 ± 4.6 years old (minimum 18.4, maximum 32.8 years) with 16 (57.1%) females and 12 (42.9%) males. This cohort of adults with CFM scored lower in the physical domain (13.8 ± 1.7 vs 15.5 ± 3.2, <i>P</i> < .01), similar in the psychological (14.7 ± 1.9 vs 13.8 ± 3.2, <i>P</i> > .05), and higher in both the social (16.0 ± 3.2 vs 13.2 ± 3.2, <i>P</i> < .01) and environmental (16.8 ± 1.6 vs 11.7 ± 2.7, <i>P</i> < .01) domains than the WHO norm sample. There was no association between overall phenotypic severity or craniofacial surgical burden and QOL (<i>P</i> > .05).ConclusionsAdults treated for CFM perceive their physical health QOL to be lower than the WHO norms but report higher QOL in the social and environmental domains. Adult patients with CFM may demonstrate resilience and can live high-quality lives. These results underscore that their lives are not defined by CFM.</p>","PeriodicalId":49220,"journal":{"name":"Cleft Palate-Craniofacial Journal","volume":" ","pages":"10556656251347171"},"PeriodicalIF":1.1000,"publicationDate":"2025-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Quality of Life in Craniofacial Microsomia: Resilience Through Young Adulthood.\",\"authors\":\"Dominic J Romeo, Leigh Friedman, Manisha Banala, Carlos E Barrero, Benjamin B Massenburg, Jinggang J Ng, Meagan Wu, Leanne Magee, Jordan W Swanson, Jesse A Taylor, Scott P Bartlett\",\"doi\":\"10.1177/10556656251347171\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>ObjectiveWhile studies have analyzed the quality of life (QOL) in children with craniofacial microsomia (CFM), little is known about QOL in adults with CFM. This study compares QOL in adults with CFM to a comparative group using a validated questionnaire.DesignCross-sectional.SettingTertiary care center.Patients, ParticipantsAdults aged 18 years or older with CFM were contacted and administered the World Health Organization (WHO) QOL Biomedical Research and Educating Foundation questionnaire.Main Outcome Measure(s)Quality of life in adults with CFM.ResultsOne hundred and fourteen patients met inclusion criteria, 40 (35.1%) were successfully contacted, and 28 (24.6%) completed the questionnaire in 8.6 ± 2.6 min. Respondents were 23.3 ± 4.6 years old (minimum 18.4, maximum 32.8 years) with 16 (57.1%) females and 12 (42.9%) males. This cohort of adults with CFM scored lower in the physical domain (13.8 ± 1.7 vs 15.5 ± 3.2, <i>P</i> < .01), similar in the psychological (14.7 ± 1.9 vs 13.8 ± 3.2, <i>P</i> > .05), and higher in both the social (16.0 ± 3.2 vs 13.2 ± 3.2, <i>P</i> < .01) and environmental (16.8 ± 1.6 vs 11.7 ± 2.7, <i>P</i> < .01) domains than the WHO norm sample. There was no association between overall phenotypic severity or craniofacial surgical burden and QOL (<i>P</i> > .05).ConclusionsAdults treated for CFM perceive their physical health QOL to be lower than the WHO norms but report higher QOL in the social and environmental domains. Adult patients with CFM may demonstrate resilience and can live high-quality lives. These results underscore that their lives are not defined by CFM.</p>\",\"PeriodicalId\":49220,\"journal\":{\"name\":\"Cleft Palate-Craniofacial Journal\",\"volume\":\" \",\"pages\":\"10556656251347171\"},\"PeriodicalIF\":1.1000,\"publicationDate\":\"2025-06-16\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Cleft Palate-Craniofacial Journal\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1177/10556656251347171\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"Dentistry\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Cleft Palate-Craniofacial Journal","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1177/10556656251347171","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"Dentistry","Score":null,"Total":0}
引用次数: 0
摘要
目的分析儿童颅面短小症(CFM)的生活质量,但对成人颅面短小症的生活质量了解甚少。本研究使用一份有效的问卷,将CFM成人患者的生活质量与对照组进行比较。三级护理中心。研究人员联系了18岁以上的CFM患者和参与者,并填写了世界卫生组织(WHO)生物医学研究和教育基金会的生活质量问卷。主要结局指标:成人CFM患者的生活质量。结果符合纳入标准的患者114例,成功联系40例(35.1%),在8.6±2.6 min内完成问卷调查的患者28例(24.6%)。年龄23.3±4.6岁(最小18.4岁,最大32.8岁),其中女性16例(57.1%),男性12例(42.9%)。该队列CFM成人在物理领域得分较低(13.8±1.7比15.5±3.2,P P > .05),而在社交领域得分较高(16.0±3.2比13.2±3.2,P P > .05)。结论接受CFM治疗的成人认为其身体健康生活质量低于WHO标准,但在社会和环境领域报告的生活质量较高。成年CFM患者可能表现出适应力,并能过上高质量的生活。这些结果强调了他们的生命不是由CFM定义的。
Quality of Life in Craniofacial Microsomia: Resilience Through Young Adulthood.
ObjectiveWhile studies have analyzed the quality of life (QOL) in children with craniofacial microsomia (CFM), little is known about QOL in adults with CFM. This study compares QOL in adults with CFM to a comparative group using a validated questionnaire.DesignCross-sectional.SettingTertiary care center.Patients, ParticipantsAdults aged 18 years or older with CFM were contacted and administered the World Health Organization (WHO) QOL Biomedical Research and Educating Foundation questionnaire.Main Outcome Measure(s)Quality of life in adults with CFM.ResultsOne hundred and fourteen patients met inclusion criteria, 40 (35.1%) were successfully contacted, and 28 (24.6%) completed the questionnaire in 8.6 ± 2.6 min. Respondents were 23.3 ± 4.6 years old (minimum 18.4, maximum 32.8 years) with 16 (57.1%) females and 12 (42.9%) males. This cohort of adults with CFM scored lower in the physical domain (13.8 ± 1.7 vs 15.5 ± 3.2, P < .01), similar in the psychological (14.7 ± 1.9 vs 13.8 ± 3.2, P > .05), and higher in both the social (16.0 ± 3.2 vs 13.2 ± 3.2, P < .01) and environmental (16.8 ± 1.6 vs 11.7 ± 2.7, P < .01) domains than the WHO norm sample. There was no association between overall phenotypic severity or craniofacial surgical burden and QOL (P > .05).ConclusionsAdults treated for CFM perceive their physical health QOL to be lower than the WHO norms but report higher QOL in the social and environmental domains. Adult patients with CFM may demonstrate resilience and can live high-quality lives. These results underscore that their lives are not defined by CFM.
期刊介绍:
The Cleft Palate-Craniofacial Journal (CPCJ) is the premiere peer-reviewed, interdisciplinary, international journal dedicated to current research on etiology, prevention, diagnosis, and treatment in all areas pertaining to craniofacial anomalies. CPCJ reports on basic science and clinical research aimed at better elucidating the pathogenesis, pathology, and optimal methods of treatment of cleft and craniofacial anomalies. The journal strives to foster communication and cooperation among professionals from all specialties.