This is an online registry to document the psychometric properties of SF-36v2 among patients with AL Amyloidosis, to document patients' burden of disease, to better understand the patient's experience and to follow quality of life issues using a variety of QOL measures.
Study Type
OBSERVATIONAL
Enrollment
343
Online registry
South San Francisco, California, United States
Psychometric evaluation of short-form 36 (SF-36v2) in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months
Calculate burden of illness from participants using SF-36 Mental Component Score (MCS) and Physical Component Score (PCS) compared with sample from US general population and three other chronic conditions: Congestive Heart Failure, Lymphoma and COPD
The comparison is made to other populations from the baseline cross-sectional measurements. There is no timeframe, except baseline
Time frame: Baseline- cross sectional
Assess the pathway to diagnosis and treatment through a disease history specific questionnaire collecting organ involvement, initial symptoms, diagnosis duration, treatment received and other disease characteristics
The analysis is done atbaseline .
Time frame: Baseline- cross sectional
Psychometric evaluation of Kansas City Cardiomyopathy Questionnaire (KCCQ-12) in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months
Psychometric evaluation of Patient Global Impression-Severity Scale (PGI-S) in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months
Psychometric evaluation of Patient Global Assessment of Functioning (GAF) Scale in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months
Psychometric evaluation of Hematology Patient Reported Symptom Screen (HPRSS) in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Psychometric evaluation of Work Productivity and Activity Questionnaire: Specific Health Problem V2.0 (WPAI:SHP) in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months
Psychometric evaluation of MOS 6-Item Sleep Scale Standard in patients with AL Amyloidosis
Time frame: Change from Baseline to 12 months