Nationwide Awareness Campaign and Call for Dental Screening for Hereditary Hemorrhagic Telangiectasia in Germany

Urban W Geisthoff; Frank Hölzle; Boris A Stuck; Joachim Jackowski; Catherine Hand Goetz; Christina Grabowski; Freya Droege

doi:10.1155/2023/8737727

Nationwide Awareness Campaign and Call for Dental Screening for Hereditary Hemorrhagic Telangiectasia in Germany

Int J Dent. 2023 Feb 11:2023:8737727. doi: 10.1155/2023/8737727. eCollection 2023.

Authors

Urban W Geisthoff^{1

2}, Frank Hölzle³, Boris A Stuck¹, Joachim Jackowski⁴, Catherine Hand Goetz⁵, Christina Grabowski², Freya Droege⁶

Affiliations

¹ VASCERN HHT Reference Centre, Department of Otorhinolaryngology, Head and Neck Surgery, University Hospital Marburg, Philipps-Universität Marburg, Baldingerstrasse, Marburg 35043, Germany.
² Morbus Osler-Selbsthilfe e.V. (German HHT Self-Help Group), Berlin, Germany.
³ Department of Oral and Maxillofacial Plastic Surgery, University-Hospital Aachen, RWTH Aachen, Pauwelsstraße 30, Aachen 52074, Germany.
⁴ Department of Oral Surgery and Dental Emergency Care, School of Dentistry, Faculty of Health, Witten/Herdecke University, Alfred-Herrhausen-Strasse 44, Witten 58455, Germany.
⁵ Arkansas College of Osteopathic Medicine, Fort Smith, AR, USA.
⁶ VASCERN HHT Reference Centre, Department of Otorhinolaryngology, Head and Neck Surgery, Essen University Hospital, University Duisburg-Essen, Hufelandstrasse 55, Essen 45122, Germany.

Abstract

Objectives: Hereditary hemorrhagic telangiectasia (HHT) is a rare disorder encompassing facial and oral telangiectasias and visceral vascular malformations (VMs). Pulmonary VMs can lead to paradoxical embolism of thrombi or bacteria, e.g., due to dental procedures. Early detection can reduce morbidity and mortality and is recommended. However, diagnosis is often delayed for decades. Our study is assessing the feasibility and effect of a nationwide awareness campaign for early diagnosis of HHT addressing all dentists in Germany.

Methods: In 2018, one article and two reminders about HHT were published in a nationwide awareness campaign. As a proxy for the effectiveness of the campaign, researchers measured the number of first-time inquiries from patients and physicians about HHT documented by the German HHT self-help group from September 2016 until September 2019.

Results: A total of 411 first contacts with the German self-help group were documented, mainly via Internet platforms (Internet forum (n = 130) and Facebook® (n = 189)). For 9% of those patients (n = 36/411), the physician or dentist (physician: (n = 31/36, 86%; dentist: n = 5/36, 14%) informed patients about the disease HHT and the self-help group. Before publishing the first article about HHT, no dentist referred patients to the German self-help group; afterwards, 5 patients received information about HHT from their dentist and contacted the patient organization for the first time. After each publication in June, September, and December 2018, the number of new contacts increased. Contacts via phone and e-mail had the highest relative increase.

Conclusions: The repeated call for dental screening for HHT in Germany led to increased awareness of this rare disease; more patients with possible HHT received information about the condition. The authors conclude that targeted campaigns may contribute to a shorter diagnostic latency resulting in increased quality of life and life expectancy in HHT. This trial is registered with CT03549949.