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不同类型埃勒斯-当洛斯综合征的口腔健康相关生活质量。

Oral Health-Related Quality of Life in Different Subtypes of Ehlers-Danlos Syndrome.

机构信息

Department for Prosthodontics and Biomaterials, University Hospital Münster, D-48149 Münster, Germany.

Department of Oral and Maxillofacial Surgery, Hospital University Münster, 48149 Münster, Germany.

出版信息

Int J Environ Res Public Health. 2023 Jan 26;20(3):2218. doi: 10.3390/ijerph20032218.


DOI:10.3390/ijerph20032218
PMID:36767586
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9916345/
Abstract

This study assessed differences in the oral health-related quality of life (OHRQoL) between subtypes of Ehlers-Danlos syndrome (EDS). For statistical analysis, participants were divided according to their subtype: classical EDS (cEDS), hypermobile EDS (hEDS), and vascular EDS (vEDS). All other subtypes were descriptively analyzed. Free-text questions and the German short form of the Oral Health Impact Profile (OHIP-14) were used. Finally, 295 questionnaires were included, representing 10 different EDS subtypes. The mean OHIP score of all participants was 19.6 points (standard derivation (SD) ± 12.3). The most predominant subtypes showed similar reduced OHRQoL, with 18.0 (cEDS, ±12.9), 19.5 (hEDS, ±12.0), and 15.2 (vEDS, ±11.6) OHIP points. For all other subtypes, the OHIP values varied. Participants waited an average of 21.8 years (±12.8) for their diagnosis. However, within the predominant subtypes, vEDS patients waited a noticeably shorter period of 13.3 years (±13.0; = 0.004) compared to participants with hEDS. Additionally, this study showed no difference in OHRQoL for the predominant subtypes regardless of whether a participant was a self-help group member (18.8, ±12.0) or not (19.4, ±12.1; = ).

摘要

本研究评估了不同类型埃勒斯-当洛斯综合征(EDS)患者的口腔健康相关生活质量(OHRQoL)差异。为进行统计学分析,参与者根据其亚型进行了分组:经典型 EDS(cEDS)、高活动型 EDS(hEDS)和血管型 EDS(vEDS)。其他所有亚型均进行了描述性分析。使用了自由文本问题和德国口腔健康影响简表(OHIP-14)短表。最终,纳入了 295 份问卷,代表了 10 种不同的 EDS 亚型。所有参与者的平均 OHIP 得分为 19.6 分(标准差(SD)±12.3)。最主要的亚型显示出相似的 OHRQoL 降低,OHIP 得分为 18.0(cEDS,±12.9)、19.5(hEDS,±12.0)和 15.2(vEDS,±11.6)。对于所有其他亚型,OHIP 值各不相同。参与者平均等待了 21.8 年(±12.8)才得到诊断。然而,在主要亚型中,vEDS 患者等待的时间明显更短,为 13.3 年(±13.0; = 0.004),明显短于 hEDS 患者。此外,无论参与者是否为自助团体成员(18.8,±12.0),主要亚型的 OHRQoL 均无差异(19.4,±12.1; = )。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/3d0d26004903/ijerph-20-02218-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/a6c4604ba385/ijerph-20-02218-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/e76ad8687e93/ijerph-20-02218-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/3d0d26004903/ijerph-20-02218-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/a6c4604ba385/ijerph-20-02218-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/e76ad8687e93/ijerph-20-02218-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a1f7/9916345/3d0d26004903/ijerph-20-02218-g003.jpg

相似文献

[1]
Oral Health-Related Quality of Life in Different Subtypes of Ehlers-Danlos Syndrome.

Int J Environ Res Public Health. 2023-1-26

[2]
Correlation between Oral Health-Related Quality of Life and Objectively Measured Oral Health in People with Ehlers-Danlos Syndromes.

Int J Environ Res Public Health. 2020-11-8

[3]
Oral Conditions and Oral Health-Related Quality of Life of People with Ehlers-Danlos Syndromes (EDS): A Questionnaire-Based Cross-Sectional Study.

Medicina (Kaunas). 2020-9-4

[4]
Oral health-related quality of life among women with temporomandibular disorders and hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder.

J Am Dent Assoc. 2024-11

[5]
Prevalence and quality of temporomandibular disorders, chronic pain and psychological distress in patients with classical and hypermobile Ehlers-Danlos syndrome: an exploratory study.

Orphanet J Rare Dis. 2023-9-19

[6]
The dysmorphic phenotype in vascular Ehlers Danlos syndrome.

Clin Dysmorphol. 2023-1-1

[7]
Women with Ehlers-Danlos syndrome experience low oral health-related quality of life.

J Orofac Pain. 2012

[8]
Ultrastructure study of skin fibroblasts in patients with Ehlers-Danlos Syndrome (EDS): preliminary results.

Clin Ter. 2020

[9]
[Respiratory manifestations of Ehlers-Danlos syndromes].

Rev Mal Respir. 2023-3

[10]
Cardiac involvement in classical or hypermobile Ehlers-Danlos syndrome is uncommon.

Genet Med. 2020-10

引用本文的文献

[1]
Oral health and oral health-related quality of life in people with Marfan syndrome: a cross-sectional study.

BMC Oral Health. 2025-6-5

本文引用的文献

[1]
Awareness and Knowledge of Rare Diseases in German Dentists, Dental Specialists and Oral and Maxillofacial Surgeons: A Country-Wide Survey.

Medicina (Kaunas). 2022-8-17

[2]
RECOMMENDATIONS FOR USE AND SCORING OF ORAL HEALTH IMPACT PROFILE VERSIONS.

J Evid Based Dent Pract. 2022-3

[3]
Oral manifestations of Ehlers-Danlos syndromes.

Am J Med Genet C Semin Med Genet. 2021-12

[4]
Study to Investigate the Knowledge of Rare Diseases among Dentists, Orthodontists, Periodontists, Oral Surgeons and Craniomaxillofacial Surgeons.

Int J Environ Res Public Health. 2020-12-28

[5]
Correlation between Oral Health-Related Quality of Life and Objectively Measured Oral Health in People with Ehlers-Danlos Syndromes.

Int J Environ Res Public Health. 2020-11-8

[6]
Dental Manifestations of Ehlers-Danlos Syndromes: A Systematic Review.

Acta Derm Venereol. 2020-3-25

[7]
Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison.

BMJ Open. 2019-11-4

[8]
[Oral health-related quality of life in rare diseases associated with oral symptoms, diagnostic delay, and sex].

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2019-11

[9]
Self-Assessment of Oral Health-Related Quality of Life in People with Ectodermal Dysplasia in Germany.

Int J Environ Res Public Health. 2019-5-31

[10]
Rare Diseases with Periodontal Manifestations.

Int J Environ Res Public Health. 2019-3-9

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