Light Chain Amyloidosis: Patient Experience Survey from the Amyloidosis Research Consortium.

ABSTRACT:

Introduction

Information detailing the experience of patients with light chain (AL) amyloidosis is lacking. The primary aim of this study was to gather data on the patient experience to understand the challenges in diagnosis and to gain insight into barriers to accessing appropriate care.

Methods

Patients with amyloidosis, family members, and caregivers were invited to participate in an online 16-question survey (available from January 29 to February 5, 2015). Participants with AL amyloidosis were sent an eight-question follow-up survey.

Results

The initial survey was completed by 533 participants (follow-up survey completed by 201 participants). AL amyloidosis was the most common diagnosis. For 37.1% of respondents, the diagnosis of amyloidosis was not established un

SUBMITTER: Lousada I 

PROVIDER: S-EPMC4635176 | biostudies-literature | 2015 Oct

REPOSITORIES: biostudies-literature