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The effects of epistaxis on health‐related quality of life in patients with hereditary hemorrhagic telangiectasia
Author(s) -
Merlo Christian A.,
Yin Linda X.,
Hoag Jeffrey B.,
Mitchell Sally E.,
Reh Douglas D.
Publication year - 2014
Publication title -
international forum of allergy and rhinology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.503
H-Index - 46
eISSN - 2042-6984
pISSN - 2042-6976
DOI - 10.1002/alr.21374
Subject(s) - medicine , telangiectasia , quality of life (healthcare) , pediatrics , surgery , nursing
Background Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disease mainly characterized by epistaxis in more than 96% of patients. Recently, a validated questionnaire known as the HHT Epistaxis Severity Score (ESS) was developed. However, little is known about the relationship between epistaxis and quality of life. We hypothesize that epistaxis severity is a major factor predicting health‐related quality of life (HR‐QoL) in HHT patients. Methods This is a cross‐sectional study. The ESS questionnaire and Medical Outcomes Study 36‐item short form (SF‐36) were administered to subjects through an Internet survey. All participants had a definitive diagnosis of HHT through Curaçao criteria or genetic testing. Demographic information, genetics, and extensive histories were also collected. Descriptive analyses were performed with calculations of means and standard deviations (SDs) for continuous variables and proportions for categorical variables. Linear regressions were then performed to assess the association between HR‐QoL and ESS. Results A total of 604 subjects participated between April and August 2008. All patients reported epistaxis, 285 (47.2%) had telangiectasias, and 545 (90.2%) had a family history of HHT; 167 (27.6%) patients had mild epistaxis (ESS <4), 285 (47.2%) reported moderate epistaxis (≥4 ESS <7), and 152 (25.2%) reported severe epistaxis (ESS ≥7). Patients with severe epistaxis had lower scores for both the Physical Component Summary (PCS) and the Mental Component Summary (MCS) of HR‐QoL when compared to those with mild epistaxis ( p < 0.001, p < 0.001). Conclusion The ESS is a major determinant of HR‐QoL and should be considered as a measurement of treatment efficacy in HHT‐related epistaxis.