[Recurrent nosebleeds in patients with hereditary hemorrhagic telangiectasia]

Hereditary hemorrhagic telangiectasia (HHT) is an inherited autosomal dominant vascular disease, which can cause multiple symptoms, the cardinal one being chronic recurrent nosebleeds. The aim of this study was to determine, whether these chronic recurrent episodes are felt by the patients to be merely isolated episodes or affect their quality of life (QoL). Also assessed was the extent to which QoL is more impaired in patients with HHT than in those with other chronic diseases.

This prospective cross-sectional study was based on a German questionnaire, "Profile of Quality of Life of Chronically Ill Patients"(PLC) together with a newly formulated questionnaire dealing with HHT-specific symptoms. Comparisons were made with German normative reference data, as well as with data from randomly selected patients with various chronic diseases.

90% of patients with HHT considered their recurrent nosebleeds to be the most disturbing symptom, interfering with hobbies and leisure time in 63% of them. Those with HHT had worse results in 5 of 6 PLC scales than those with other chronic diseases such as cardiomyopathy or rheumatic disease. 73% of the patients stated that they would appreciate new ways of treating these nosebleeds.

There is a great need for optimizing the treatment of chronic recurrent nosebleeds. Lasting reduction of such bleeds by new therapeutic methods seems unlikely to happen in the near future. For this reason multimodal treatment options, including psychological and relaxation techniques, should be considered. Such an approach may reduce the stress on patients (and subsequent nosebleeds) and result in a direct improvement of their quality of life.