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Summary  Light chain ( AL ) amyloidosis is a rare disease associated with significant, irreversible organ dysfunction and high case fatality. An observational study was conducted to assess health‐related quality of life ( HRQ oL) in patients treated for  AL  amyloidosis between 1994 and 2014 with both high dose melphalan and stem cell transplantation ( HDM / SCT ) or non‐ SCT  chemotherapy regimens. The  SF ‐36v1 ®  Health Survey ( SF ‐36) was administered to assess  HRQ oL during clinic visits. Analysis of variance was used to compare pre‐ and post‐treatment  HRQ oL within each treatment group to an age‐ and gender‐adjusted general population ( GP ) normative sample. Cox proportional hazard models were fit to examine associations between pre‐treatment levels of  HRQ oL and mortality within 1 and 5 years after initiating specific treatment regimens ( HDM / SCT :  n  = 402; non‐ SCT  chemotherapy regimens:  n  = 172). Among patients who received  HDM / SCT , there were significant improvements following treatment in vitality, social functioning, role‐emotional and mental health. Worse pre‐treatment  SF ‐36 physical component scores were associated with a greater risk of mortality in both treatment groups and follow‐up periods ( P  ≤   0·005 for both). [Correction added on 20 October 2017, after first online publication: This  P  value has been corrected]. Using  HRQ oL assessments in every physician visit or treatment may provide valuable insights for treating rare conditions like  AL  amyloidosis.

A longitudinal evaluation of health‐related quality of life in patients with AL amyloidosis: associations with health outcomes over time