Development and Validation of the Nasal Outcome Score for Epistaxis in Hereditary Hemorrhagic Telangiectasia (NOSE HHT).

ABSTRACT:

Importance

Epistaxis is the greatest cause of morbidity in patients with hereditary hemorrhagic telangiectasia (HHT); because of this, a validated epistaxis-specific quality-of-life instrument for HHT should be made available.

Objective

To develop and validate an epistaxis-specific quality-of-life patient-reported outcome measure for HHT.

Design, setting, and participants

This survey study focused on the development and validation of the Nasal Outcome Score for Epistaxis (NOSE) in HTT (NOSE HHT) outcome measure with data prospectively collected from December 10, 2019, to March 15, 2020. A total of 401 patients were recruited from within the Cure Hemorrhagic Telangiectasia online patient advocacy social media network, the Washington University HHT Center of Excellence,

SUBMITTER: Peterson AM 

PROVIDER: S-EPMC7530813 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature