Accepted for/Published in: JMIR Formative Research
Date Submitted: Nov 18, 2022
Date Accepted: Sep 29, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
The patient journey toward a diagnosis of Light Chain Amyloidosis: findings from a social listening study
ABSTRACT
Background:
Systemic light chain (AL) amyloidosis is a rare and multi-system disease. Delayed diagnoses were common in AL amyloidosis, resulting in poor prognosis.
Objective:
To better understand the current situation and patient journey of AL amyloidosis in China, we conduct a content analysis by using data from social media platforms.
Methods:
Publicly available social media content between January 2008 and April 2021 was searched. After performing data collection steps collection by machine models, a series of disease-related posts were derived. Nature language processing (NLP) was used to identify the relevance of variables, followed by further manual evaluation and analysis.¬
Results:
2,204 valid posts related to AL amyloidosis were included in this study, 89.29% produced by haodf.com. Of these posts, 58% of patients were male and the median age was 57 years old; 66% of posts mentioned renal-related symptoms, followed by heart (38%), liver (22%), stomach (17%), lung (14%) and intestines (13%); and 68% of patients had ≥2 organ-related symptoms. Symptoms for AL amyloidosis were non-specific, weakness (9%), edema (7%), hypertrophy (6%), and swelling (5%) were the most frequently mentioned by patients. 62% of patients reported that it took more than one year to be finally diagnosed. Patients with AL amyloidosis experienced multiple physician visits, and nephrologists (34%) and hematologists (27%) accounted for the most common specialists they would seek for the initial consultation. Besides, inter-hospital referrals were also commonly seen in patients with AL amyloidosis, centralizing in tertiary hospitals.
Conclusions:
The study describes clinical characteristics and patient experience from symptom onset to diagnosis of AL amyloidosis in China. Patients experience a variety of referrals during their journey towards to a diagnosis. Increasing awareness of the disease and early referral to a specialized center with expertise may reduce delayed diagnosis and improve patient management.
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