乔伯特综合征患者照顾者报告的口腔健康的行为关联：一项横断面观察研究。
Behavioral Correlates of Caregiver-Reported Oral Health of Individuals With Joubert Syndrome: A Cross-Sectional Observational Study.
作者信息
Aung Sai Win Kyaw Htet, Orack Joshua, Doherty Dan, Nelson Travis, Dempsey Jennifer C, Li Sophie R, Chi Donald L
机构信息
Department of Oral Health Sciences, University of Washington School of Dentistry, Seattle, Washington, USA.
Divisions of Genetics and Developmental Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
出版信息
Spec Care Dentist. 2025 May-Jun;45(3):e70050. doi: 10.1111/scd.70050.
AIM
To identify the behavioral correlates of caregiver-reported oral health of individuals with Joubert Syndrome (JS).
METHODS
This cross-sectional study included 302 caregivers of individuals with JS from the JS registry who responded to a 56-item REDCap survey, and a purposive subset of 30 participants with JS for which a dental screening was completed. The primary outcome was caregiver-reported oral health of individuals with JS (good/very good vs. fair/poor). Logistic regression models were used to generate confounder-adjusted odds ratios (OR) and evaluate associations between oral health behaviors and caregiver-reported oral health of individuals with JS (p < 0.05).
RESULTS
The mean age of individuals with JS was 14.6 years (SD: 10.3). Most caregivers were female (84.1%), White (87.4%), non-Hispanic (91.1%), and reported annual household incomes above $100 000 (53.7%). Behaviors significantly associated with poorer oral health included not eating or drinking by mouth (OR = 4.52, p = 0.005), not toothbrushing daily (OR = 5.29, p < 0.001), and infrequent toothpaste use (OR = 3.68, p = 0.003). Screenings showed 40.0% had poor hygiene, 23.3% had untreated caries, and 46.7% had gingivitis.
CONCLUSIONS
Future efforts should focus on improving oral health behaviors to prevent dental disease in individuals with JS.
目的
确定照料者报告的乔布综合征（JS）患者口腔健康的行为相关因素。
方法
这项横断面研究纳入了来自JS登记处的302名JS患者的照料者，他们对一项包含56个条目的REDCap调查做出了回应，还纳入了30名有目的选取的JS患者作为子集，为他们完成了牙科筛查。主要结局是照料者报告的JS患者的口腔健康状况（良好/非常好与一般/差）。使用逻辑回归模型生成经混杂因素调整的比值比（OR），并评估口腔健康行为与照料者报告的JS患者口腔健康之间的关联（p<0.05）。
结果
JS患者的平均年龄为14.6岁（标准差：10.3）。大多数照料者为女性（84.1%）、白人（87.4%）、非西班牙裔（91.1%），且报告的家庭年收入超过10万美元（53.7%）。与较差口腔健康显著相关的行为包括不用口进食或饮水（OR = 4.52，p = 0.005）、不每天刷牙（OR = 5.29，p < 0.001）以及很少使用牙膏（OR = 3.68，p = 0.003）。筛查显示，40.0%的人卫生状况差，23.3%的人有未经治疗的龋齿，46.7%的人有牙龈炎。
结论
未来的工作应侧重于改善口腔健康行为，以预防JS患者的牙科疾病。
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