PCR252 Patient and Caregiver Burden Associated With Caring for a Child With Alagille Syndrome: Mixed-Methods Development of Health State Vignettes

L Quadrado, DB Mogul, A Gurevich, K Gallop, H de Freitas,AK Sussex, C Dixon,A Taylor, R Howard

Value in Health（2022）

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摘要

Alagille syndrome (ALGS) is a rare, genetic, life-threatening cholestatic liver disease usually diagnosed in infancy. This study aimed to explore patient and caregiver burden associated with ALGS and to develop health state vignettes suitable for use in economic evaluations of new treatments for ALGS.

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关键词

alagille syndrome,caregiver burden associated,caring,mixed-methods

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