Abstract

IntroductionLight-chain (AL) amyloidosis is a rare, progressive, and typically fatal disease. Health-related quality of life (HRQoL) has been shown to be a significant prognostic factor associated with clinical outcomes such as survival and response to treatment. A better understanding of how patterns of HRQoL may be prospectively associated with costly healthcare resource utilization, such as emergency department (ED) visits and inpatient hospitalizations, is warranted.MethodsA secondary data analysis of a non-interventional, longitudinal online study of patients with AL amyloidosis (n = 224) was conducted. Negative binomial regression models were used to examine whether initial HRQoL scores (as measured by the SF-36v2® Health Survey [SF-36v2], where higher scores reflect better HRQoL) and changes in HRQoL were associated with the number of ED visits and inpatient hospitalizations during a 12-month period. Incidence rate ratios were interpreted by 5-point decrements in initial HRQoL scores and minimally important changes in HRQoL change scores.ResultsThere were significant inverse associations between initial SF-36v2 scores and subsequent rates of ED visits and inpatient hospitalizations across all domains and summary components (p < 0.05 for all). In contrast, changes in physical, but not mental, functioning were associated with rates of ED visits and inpatient hospitalizations during a 12-month period of observation.ConclusionScores from patient-reported HRQoL surveys may be helpful in identifying patients at risk of future ED visits and hospital admissions, and may serve as a proxy for disease severity. Such information can provide stakeholders with insight into the humanistic and societal cost associated with AL amyloidosis.

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