德国天使综合征患者的口腔保健——一项基于问卷调查的研究

Oral health care of people with Angelman syndrome in Germany - a questionnaire-based study.

作者信息

Schmidt Peter, Tantzen Caroline, Fricke Oliver, Schulte Andreas Gerhard

机构信息

Department of Special Care Dentistry, Witten/Herdecke University, Alfred-Herrhausen-Strasse 50, 58448, Witten, Germany.

Department of Conservative Dentistry and Periodontology, Centre of Dentistry, Oral and Maxillofacial Medicine, Ulm University Hospital, University of Ulm, Albert-Einstein-Allee 11, 89081, Ulm, Germany.

出版信息

BMC Oral Health. 2025 Jun 25;25(1):959. doi: 10.1186/s12903-025-06357-9.

DOI:10.1186/s12903-025-06357-9

PMID:40563115

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12199482/

Abstract

BACKGROUND

Caregivers of people with Angelman syndrome (AS) in Germany were surveyed to amend a lack of information on supportive and preventive oral care for persons in this group.

METHODS

Returned anonymized questionnaires that had been sent to the approx. 600 members of the German Angelman Syndrome Association were evaluated. The study was approved by the ethics committee of Witten/Herdecke University (# 121/2021).

RESULTS

In total, 220 questionnaires for people with AS aged between 1 and 54 years old (mean age 17.0 years) were evaluated. Overall, 38.1% ( = 84) of the people with AS were younger than three years at their first dental appointment; 60.0% ( = 132) tooth brushed twice daily; 15.9% ( = 35) brushed for 2–3 min; and 78.5% ( = 172) did not use dental hygiene products other than toothbrushes. Age-specific differences emerged: Although only 45.0% ( = 45) of people with AS ≥ 18 years ( = 100) began tooth brushing in the first year of life, this increased to 69.7% ( = 89) for people with AS < 18 years ( = 119). Also, while 76.5% ( = 91) of people with AS < 18 years were usually assisted with tooth brushing by the same person, this applied to only 50.0% ( = 50) of people with AS ≥ 18 years ( < 0.001; Chi-Square-Test).

CONCLUSIONS

There are age-dependent differences in tooth brushing behavior among people with AS. Irrespective of age and sex, nearly all people with AS required life-long oral health support at home. Professional oral health support, e.g., regular check-ups, individual prophylactic measures, and dental cleaning, remains essential for this group. Hence, efforts must be increased to develop and offer more interprofessional dental prophylaxis concepts for people with AS of all ages, from infancy to senescence. These findings accord with those for other groups of people with syndromic disorders, such as Down syndrome.

CLINICAL TRIAL NUMBER

Not applicable.

SUPPLEMENTARY INFORMATION

The online version contains supplementary material available at 10.1186/s12903-025-06357-9.

摘要

背景

对德国天使综合征（AS）患者的照料者进行调查，以弥补该群体在支持性和预防性口腔护理方面信息的不足。

方法

对寄给德国天使综合征协会约600名成员并回收的匿名问卷进行评估。该研究获得了维滕/黑尔德克大学伦理委员会的批准（#121/2021）。

结果

总共评估了220份针对年龄在1至54岁（平均年龄17.0岁）的AS患者的问卷。总体而言，38.1%（=84）的AS患者首次看牙时年龄小于3岁；60.0%（=132）的患者每天刷牙两次；15.9%（=35）的患者刷牙2 - 3分钟；78.5%（=172）的患者除牙刷外不使用其他口腔卫生用品。出现了年龄特异性差异：虽然18岁及以上的AS患者（=100）中只有45.0%（=45）在生命的第一年开始刷牙，但18岁以下的AS患者（=119）这一比例增至69.7%（=89）。此外，18岁以下的AS患者中76.5%（=91）通常由同一人协助刷牙，而18岁及以上的AS患者中这一比例仅为50.0%（=50）（<0.001；卡方检验）。

结论

AS患者的刷牙行为存在年龄依赖性差异。无论年龄和性别，几乎所有AS患者在家中都需要终身口腔健康支持。专业的口腔健康支持，如定期检查、个性化预防措施和牙齿清洁，对该群体仍然至关重要。因此，必须加大力度为从婴儿期到老年期的各年龄段AS患者开发并提供更多跨专业的牙齿预防方案。这些发现与其他综合征性疾病群体（如唐氏综合征）的情况一致。