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Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from Three Patient Cohorts
Avery A Rizio1, Kristen L McCausland1, Michelle K White1
1QualityMetric Incorporated, LLC, Johnston, RI, USA.
Insights
Light chain (AL) amyloidosis significantly impacts employment and work productivity, especially in patients with advanced cardiac involvement. This highlights the need for better treatments to improve patient functioning and reduce disease-related costs.
Area of Science:
- Hematology
- Oncology
- Cardiology
Background:
- Light chain (AL) amyloidosis is a rare, progressive systemic disease.
- Cardiac involvement is a major risk factor for mortality in AL amyloidosis patients.
- Understanding employment and work impacts is crucial for patient well-being.
Purpose of the Study:
- To investigate employment patterns and work impacts in patients with AL amyloidosis.
- To analyze the relationship between work impacts, health-related quality of life (HRQoL), and cardiac severity.
- To contextualize quantitative findings with qualitative patient experiences.
Main Methods:
- Utilized data from three patient cohorts in the US, recruited via advocacy groups.
- Administered SF-36v2, WPAI, and KCCQ-12 questionnaires to assess HRQoL and work productivity.
- Employed multivariable logistic regression to analyze work impacts and HRQoL, stratified by NYHA cardiac classes.
Main Results:
- Reduced work productivity and significant work impacts were prevalent in AL amyloidosis patients (p<0.05).
- Patients with NYHA class 3 or 4 cardiac involvement experienced the most severe work-related issues.
- Newly diagnosed patients, particularly those with advanced cardiac disease, frequently faced employment changes, missed work, and disability.
Conclusions:
- AL amyloidosis substantially affects employment outcomes, especially in advanced stages.
- Effective treatments and interventions are needed to enhance patient functioning and reduce indirect costs.
- Addressing work-related challenges is essential for improving overall patient outcomes in AL amyloidosis.
Background:
Light chain (AL) amyloidosis is a rare and progressive disease that affects myriad organs and systems. Patients with cardiac involvement have the highest risk of death. This report compiles findings across three cohorts of patients with AL amyloidosis to understand patterns of employment and work impacts.
Methods:
Data came from three cohorts recruited through patient advocacy organizations in the US. Patients in Cohort 1 completed the SF-36v2® Health Survey (SF-36v2), the Work Productivity and Activity Impairments - Specific Health Problem (WPAI) questionnaire, and the 12-item Kansas City Cardiomyopathy Questionnaire (KCCQ-12). The relationship between work impacts (WPAI scores) and HRQoL (SF-36v2 scores) was investigated using multivariable logistic regression and summarized according to cardiac severity using New York Heart Association (NYHA) classes estimated from KCCQ-12 scores. Changes in employment, days of missed work, and long-term disability due to AL amyloidosis were summarized for patients diagnosed in the past 24 months and stratified by NYHA class (Cohort 2). Findings were contextualized using patient interviews (Cohort 3).
Results:
Work-related impacts, especially reduced productivity, were common among patients with AL amyloidosis. WPAI scores were significantly related to HRQoL (p<0.05 for all models). Among patients with cardiac involvement, the greatest degree of work impacts was observed for those in NYHA class 3 or 4. Changes in employment, missed work, and long-term disability were common among newly diagnosed patients, especially among those in NYHA class 3 or 4. Patient interviews supported the survey findings; patients described absences, reduced productivity at work, and loss of employment due to the disease and its treatment.
Conclusion:
Patients with AL amyloidosis, particularly those with more advanced disease, experience impacts across a range of employment-related outcomes. These findings highlight the need for more effective treatments and interventions which may improve functioning and patient outcomes, while reducing indirect costs associated with the disease.

