The Impact of AL Amyloidosis: The Patient Experience.

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

Journal

Hematology/oncology clinics of North America
ISSN: 1558-1977
Titre abrégé: Hematol Oncol Clin North Am
Pays: United States
ID NLM: 8709473

Informations de publication

Date de publication:
12 2020
Historique:
entrez: 25 10 2020
pubmed: 26 10 2020
medline: 2 6 2021
Statut: ppublish

Résumé

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.

Identifiants

DOI: 10.1016/j.hoc.2020.08.003 PMID: 33099433
pubmed: 33099433
pii: S0889-8588(20)30098-8
doi: 10.1016/j.hoc.2020.08.003
pii:
doi:

Types de publication

Journal Article Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

1193-1203

Informations de copyright

Copyright © 2020 Elsevier Inc. All rights reserved.

Déclaration de conflit d'intérêts

Disclosure The authors have nothing to disclose.

Auteurs

Isabelle Lousada (I)

Amyloidosis Research Consortium, 320 Nevada Street, Suite 210, Newton, MA 02460, USA. Electronic address: ilousada@arci.org.

Mackenzie Boedicker (M)

Mackenzie's Mission, Great Falls, Virginia.

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Classifications MeSH

questionsmedicales.fr › Organisations et économie des soins de santé › Organismes › Congrès comme sujet › The Impact of AL Amyloidosis: The Patient Experience.
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › The Impact of AL Amyloidosis: The Patient Experience.
questionsmedicales.fr › Maladies du système immunitaire › Syndromes immunoprolifératifs › Paraprotéinémies › Amylose à chaine légère d'immunoglobuline › The Impact of AL Amyloidosis: The Patient Experience.
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Qualité des soins de santé › Mécanismes d'évaluation des soins de santé › Évaluation des résultats et des processus en soins de santé › Évaluation de résultat (soins) › Évaluation des résultats des patients › The Impact of AL Amyloidosis: The Patient Experience.
questionsmedicales.fr › Régions géographiques › Amériques › Amérique du Nord › États-Unis › The Impact of AL Amyloidosis: The Patient Experience.
questionsmedicales.fr › Organisations et économie des soins de santé › Organismes › Gouvernement › Agences gouvernementale américaines › Department of Health and Human Services (USA) › Public Health Service (USA) › Food and Drug Administration (USA) › The Impact of AL Amyloidosis: The Patient Experience.