Nationwide call for screening by dentists for hereditary hemorrhagic telangiectasia – first results

Introduction:

Hereditary hemorrhagic telangiectasia (HHT) is a rare inherited disease. Nosebleeds and mucocutaneous telangiectases are frequent manifestations. One of the predilection sites of the latter are oral mucosa, face and lips. The first manifestation is often delayed for decades. This is problematic as an early screening for visceral manifestations is recommended to avoid serious complications.

Methods:

The German HHT self-help group prospectively noted first contacts of affected persons by phone. On June 16th 2018 a case report about a serious infectious complication after professional dental cleaning due to lung shunting in HHT was published in an interdisciplinary approach in the journal of the German dental association and the Federal Association of Fund Dentists in Germany. This was connected with a call to search for typical telangiectases and if in combination with nosebleeds to connect the patient with the self-help group. A reminder was published on September 16th 2018 in the same journal.

Results:

Within 17.5 months before the call 3 spontaneous first contacts by phone were registered (0.17/month). Within 3.5 months after the call 9 were counted (2,57/month). Two of the latter could be connected directly to the publication. Data collection continues; evaluation of other communication channels (e-mail, etc.) and of the national diagnosis database are further planned steps.

Conclusion:

First results indicate a moderate efficacy of the call presented by a rise of the frequency of contacts (initially more than tenfold). An interdisciplinary cooperation seems to be a way for screening and – in consequence – for reducing morbidity in patients with this complex disease.

ClinicalTrials.gov Identifier: NCT03549949

Publication History

Publication Date:
23 April 2019 (online)