Nationwide Awareness Campaign and Call for Dental Screening for HHT in Germany

Background: HHT is a rare, systemic, inherited disorder in which patients suffer from telangiectasias, especially of the facial skin, lips and oral mucosa, as well as visceral vascular malformations (VM). The diagnosis of HHT is often delayed for decades. However, early detection of VMs can reduce morbidity and mortality. Methods: In 2018 a nationwide awareness campaign addressing all dentists in Germany consisted of one published article and two reminders about HHT. 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 lead 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. Clinical Trials.gov ID: CT03549949