Introduction: Light-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.
Methods: A 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.
Results: There 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.
Conclusion: Scores 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.