The Impact of AL Amyloidosis The Patient Experience

被引：3

作者：

Lousada, Isabelle ^{[1
]}

Boedicker, Mackenzie ^{[2
,3
]}

机构：

[1] Amyloidosis Res Consortium, 320 Nevada St,Suite 210, Newton, MA 02460 USA

[2] Mackenzies Mission, Great Falls, VA USA

[3] 11602 Meadow Ridge Lane, Great Falls, VA 22066 USA

来源：

HEMATOLOGY-ONCOLOGY CLINICS OF NORTH AMERICA | 2020年 / 34卷 / 06期

关键词：

Amyloidosis; Patient; Voices; Perspective; Experience; LIGHT-CHAIN AMYLOIDOSIS;

D O I：

10.1016/j.hoc.2020.08.003

中图分类号：

R73 [肿瘤学];

学科分类号：

100214 ;

摘要：

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.

引用

页码：1193 / +

页数：13

共 6 条

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