Patient Journey Toward a Diagnosis of Light Chain Amyloidosis in a National Sample: Cross-Sectional Web-Based Study.

ABSTRACT:

Background

Systemic light chain (AL) amyloidosis is a rare and multisystem disease associated with increased morbidity and a poor prognosis. Delayed diagnoses are common due to the heterogeneity of the symptoms. However, real-world insights from Chinese patients with AL amyloidosis have not been investigated.

Objective

This study aimed to describe the journey to an AL amyloidosis diagnosis and to build an in-depth understanding of the diagnostic process from the perspective of both clinicians and patients to obtain a correct and timely diagnosis.

Methods

Publicly available disease-related content from social media platforms between January 2008 and April 2021 was searched. After performing data collection steps with a machine model, a series of disease-related posts w

SUBMITTER: Dou X 

PROVIDER: S-EPMC10654903 | biostudies-literature | 2023 Nov

REPOSITORIES: biostudies-literature