ArticleClinical lymphoma, myeloma & leukemia2026
Diagnostic Journeys and Delays in AL Amyloidosis: Insights From a Cross-Sectional Patient Survey.
Article in Clinical lymphoma, myeloma & leukemia, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Article
- Multi-center validation of a machine learning model for early detection of monoclonal immunoglobulin-related disorders using routine laboratory data.Frontiers in immunology · 2026Article
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Authors and funding
14 authors.
Funding
Abstract
backgroundImmunoglobulin light-chain (AL) amyloidosis is a rare plasma cell disorder with multiorgan involvement. Delayed diagnosis remains prevalent, contributing to high early mortality, particularly among patients with cardiac involvement.
objectivesThis study aimed to evaluate the diagnostic journey of AL amyloidosis patients, including presenting symptoms, diagnostic pathways, and perspectives on delays in diagnosis.
methodsA cross-sectional survey was conducted through the HealthTree® CureHub among individuals with AL amyloidosis.
resultsEighty-seven patients completed the survey between 03/12/2023 to 07/10/2024. Median age was 66 years. Initial signs/symptoms were most often self-identified. Most individuals experienced 1 to 3 symptoms, most commonly fatigue, weakness, and swelling. Most patients first sought care from primary care physicians (37%) or organ specialists (27%). A median of 3 providers were seen before diagnosis. Cardiologists and nephrologists established the diagnosis in only 16% and 14% of cases, respectively. A diagnostic delay was reported by 59%, with 35% experiencing delays >12 months; approximately 50% attributed the delay to lack of provider awareness, and 65% felt the diagnostic process required significant improvement.
conclusionsDiagnostic delays remain a major challenge in AL amyloidosis. Since general practitioners and organ specialists are often the first point of contact, increasing awareness among these providers may improve diagnostic timelines.
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