A grading scale for epistaxis in hereditary haemorrhagic teleangectasia

Epistaxis is the most common symptom in patients with Hereditary Haemorrhagic Telangiectasia (HHT). Different institutions are using different treatment modalities and different grading systems. The treatment options depend on the grade of epistaxis. It is important to have a common grading system to compare and evaluate the effectiveness of different treatment options. Furthermore, it is important to correlate quality of life with an epistaxis grading system. The aim of this work was to propose a new grading system for epistaxis in HHT.

A medical literature search was performed for grading systems of epistaxis in HHT. A questionnaire on five criteria's for a new grading system was sent to 22 internationally renowned medical experts, who have published results on epistaxis in HHT.

Four different grading systems are currently in use for the grading of epistaxis in HHT. The response rate of the questionnaire was 43%. All the experts who answered the questionnaire agreed that the aimed grading system should be easy to understand for the patients. 90% of them wanted the system to focus on a definite time period. 70% answered that blood transfusion should be included in the grading system as an important factor. There was no clear consensus on whether the system should be a single multi-item scale or a composite scale consisting of more than one single scales, and similarly there was no clear consensus on whether is should be an absolute or a relative scale.

The proposed system should be easy to understand for the patients, focus on a definite time period of observation, and include blood transfusion as one of its parameters. For statistical reasons, an epistaxis grading scale with at least one absolute end point would be preferable.