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Diagnostic delay and characterization of the clinical prodrome in AL amyloidosis among 1,523 US adults diagnosed between 2001 and 2019

European Journal of Haematology Jun 26, 2021

Hester LL, Gifkins DM, Bellew K, et al. - Among adults (n = 1,523) with newly diagnosed light chain (AL) amyloidosis, this retrospective observational study was carried out to characterize the clinical prodrome as well as diagnostic delay to inform early detection. The participants were selected from the Optum de-identified Clinformatics Datamart US health care claims database. Malaise/fatigue (61%) and dyspnea (59%) were documented as the most common individual AL amyloidosis signs/symptoms. Total 77% of patients had cardiac signs/symptoms, followed by renal (62%) and nervous (59%) signs/symptoms. Presence of multisystem involvement (≥3 systems) was evident in 54%. Median time from symptom initiation to AL amyloidosis diagnosis was 2.7 years. High health care utilization was noted between first AL amyloidosis signs/symptoms and diagnosis, with 50% visiting ≥ 5 physician types. Findings revealed a lengthy and complex clinical prodrome in AL amyloidosis patients. There is a necessity for novel approaches to early diagnosis in order to obtain improved outcomes.

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