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.