The Impact of AL Amyloidosis: The Patient Experience

Isabelle Lousada; Mackenzie Boedicker

doi:10.1016/j.hoc.2020.08.003

The Impact of AL Amyloidosis: The Patient Experience

Hematol Oncol Clin North Am. 2020 Dec;34(6):1193-1203. doi: 10.1016/j.hoc.2020.08.003. Epub 2020 Sep 30.

Authors

Isabelle Lousada¹, Mackenzie Boedicker²

Affiliations

¹ Amyloidosis Research Consortium, 320 Nevada Street, Suite 210, Newton, MA 02460, USA. Electronic address: ilousada@arci.org.
² Mackenzie's Mission, Great Falls, Virginia.

PMID: 33099433
DOI: 10.1016/j.hoc.2020.08.003

Abstract

This article focuses on the patient experience of AL amyloidosis; the unique challenges that patients face from the journey to diagnosis through treatment; and management of this complex multisystemic disease. Included are descriptions of the most significant AL amyloidosis symptoms as well as addressing burden of disease, including financial concerns, and psychological impact. In 2015 a Patient Focused Drug Development meeting held at the Food and Drug Administration provided valuable data that is shaping the drug development landscape and are reviewed here. The article concludes with a list of useful resources and organizations for patients and caregivers.

Keywords: Amyloidosis; Experience; Patient; Perspective; Voices.

Publication types

Review

MeSH terms

Congresses as Topic
Humans
Immunoglobulin Light-chain Amyloidosis / therapy*
Patient Outcome Assessment*
United States
United States Food and Drug Administration