Health-Related Quality of Life Outcome Measures in Individuals With Hereditary Hemorrhagic Telangiectasia: A Scoping Review.

Anna J Gong,Tushar Garg,Adham Khalil,Prateek C Gowda,Stephen C Mathai,Nicholas R Rowan,Christian A Merlo,Clifford R Weiss

American journal of rhinology & allergy（2023）

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摘要

Comparison of results across studies remains challenging given the heterogeneity in outcomes measures. Further development of HHT-specific patient-reported outcomes instruments that capture the global illness experience of HHT is needed.

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hereditary hemorrhagic telangiectasia, quality of life, patient-reported outcome measures, epistaxis, quality of life metrics, symptom burden, vascular malformations, fatigue, disease impact, self-perceived health

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