Characterizing the High Disease Burden of Transthyretin Amyloidosis for Patients and Caregivers.

ABSTRACT:

Introduction

Transthyretin amyloidosis (ATTR amyloidosis), whether manifesting as familial amyloid polyneuropathy (ATTR-PN) or cardiomyopathy (ATTR-CM), is a progressive, debilitating, and often fatal, rare disease requiring significant caregiver support. This study aims to better characterize the burden of disease for ATTR amyloidosis patients and caregivers.

Methods

Patients and caregivers in the USA and Spain were recruited through patient advocacy groups to complete a cross-sectional survey. Assessments included the 12-Item Short Form Health Survey, the Work Productivity and Activity Impairment Questionnaire, the Zarit Burden Interview, pain and symptom measures, health care resource use measures, and caregiving burden measures.

Results

Respondents included 60 ATT

SUBMITTER: Stewart M 

PROVIDER: S-EPMC6283802 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature