Abstract

Light chain (AL) amyloidosis is a serious, complex disease that is associated with a high degree of humanistic burden and morbidity. We investigated whether health-related quality of life (HRQoL) was prospectively associated with rates of emergency room (ER) visits and hospitalization, independent of other patient characteristics. The analysis sample included patients with AL amyloidosis (n=184) from the United States, Europe, and other countries who completed three online surveys (i.e. initial, six month and twelve month follow-up) in a non-interventional, longitudinal online study. Negative binomial regression models were used to examine the association between baseline HRQoL scores (SF-36v2® Health Survey physical and mental component (PCS, MCS) summary scores) and the number (cumulative counts across both follow-ups) of ER visits and hospitalizations. Incident rate ratios (IRR) were interpreted in terms of 5 point decrements in HRQoL scores. A five-point lower PCS score was associated with a 54% greater rate of ER visits (p <0.001) and a 35% greater rate of hospitalizations (p <0.001). A five-point lower MCS score was associated with a 29% greater rate of ER visits (p <0.001) and a 34% greater rate of hospitalizations (p <0.001). Both physical and mental HRQoL impairment were significantly associated with increased rates of ER visits and hospitalizations, independent of other patient characteristics. Scores from patient-reported HRQoL surveys may serve as a proxy for disease severity and prognosis for the prediction of future ER visits and hospitalizations. Elucidating the magnitude of healthcare resource utilization in AL amyloidosis provides clinicians, scientists, and regulators an understanding of the burden of disease that these patients experience.

Full Text
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