Changes in amyloidosis phenotype over 11 years in a cardiac amyloidosis referral centre cohort in France.

Cardiac amyloidosis Clinical characteristics Cohort study Epidemiological characteristics

Journal

Archives of cardiovascular diseases
ISSN: 1875-2128
Titre abrégé: Arch Cardiovasc Dis
Pays: Netherlands
ID NLM: 101465655

Informations de publication

Date de publication:
Oct 2023
Historique:
received: 13 02 2023
revised: 07 07 2023
accepted: 17 07 2023
pubmed: 29 8 2023
medline: 29 8 2023
entrez: 28 8 2023
Statut: ppublish

Résumé

Early cardiac amyloidosis (CA) diagnosis enables patients to access effective treatments for better long-term outcomes, yet it remains under-recognised, misdiagnosed and inadequately managed. To reduce diagnostic delays, we aimed to describe the epidemiological and clinical characteristics and changes over an 11-year period. This was a retrospective, observational cohort study of all patients referred to the Henri-Mondor Hospital for suspected CA. Overall, 3194 patients were identified and 3022 were included and analysed. Our patients came from varied ethnic backgrounds, and more than half (55.2%) had confirmed CA. Over 11 years, referrals increased 4.4-fold, mostly from cardiologists. Notably, wild-type transthyretin amyloidosis (ATTRwt) became the predominant diagnosis, with referrals increasing 15-fold from 20 in 2010-2012 to 308 in 2019-2020. The number of amyloid light chain (AL) diagnoses increased, whilst variant transthyretin amyloidosis (ATTRv) numbers remained relatively stable. Concerning disease severity, AL patients presented more frequently with severe cardiac involvement whereas an increasing number of ATTRwt patients presented with National Amyloid Centre stage I (22.0% in 2013-2014 to 45.9% in 2019-2020). Lastly, among patients diagnosed with ATTRv in 2019-2020, 83.9% had ATTR Val122Ile cardiac phenotype. This study shows that increasing cardiologist awareness and referrals have increased CA diagnoses. With improved awareness and non-invasive diagnostic techniques, more patients with ATTRwt with milder disease and more ATTRv Val122Ile mutations are being referred and diagnosed. Although more AL cases are being recognised, patients are diagnosed with severe cardiac involvement.

Sections du résumé

BACKGROUND BACKGROUND
Early cardiac amyloidosis (CA) diagnosis enables patients to access effective treatments for better long-term outcomes, yet it remains under-recognised, misdiagnosed and inadequately managed.
AIM OBJECTIVE
To reduce diagnostic delays, we aimed to describe the epidemiological and clinical characteristics and changes over an 11-year period.
METHODS METHODS
This was a retrospective, observational cohort study of all patients referred to the Henri-Mondor Hospital for suspected CA.
RESULTS RESULTS
Overall, 3194 patients were identified and 3022 were included and analysed. Our patients came from varied ethnic backgrounds, and more than half (55.2%) had confirmed CA. Over 11 years, referrals increased 4.4-fold, mostly from cardiologists. Notably, wild-type transthyretin amyloidosis (ATTRwt) became the predominant diagnosis, with referrals increasing 15-fold from 20 in 2010-2012 to 308 in 2019-2020. The number of amyloid light chain (AL) diagnoses increased, whilst variant transthyretin amyloidosis (ATTRv) numbers remained relatively stable. Concerning disease severity, AL patients presented more frequently with severe cardiac involvement whereas an increasing number of ATTRwt patients presented with National Amyloid Centre stage I (22.0% in 2013-2014 to 45.9% in 2019-2020). Lastly, among patients diagnosed with ATTRv in 2019-2020, 83.9% had ATTR Val122Ile cardiac phenotype.
CONCLUSIONS CONCLUSIONS
This study shows that increasing cardiologist awareness and referrals have increased CA diagnoses. With improved awareness and non-invasive diagnostic techniques, more patients with ATTRwt with milder disease and more ATTRv Val122Ile mutations are being referred and diagnosed. Although more AL cases are being recognised, patients are diagnosed with severe cardiac involvement.

Identifiants

pubmed: 37640624
pii: S1875-2136(23)00146-8
doi: 10.1016/j.acvd.2023.07.003
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

433-446

Informations de copyright

Copyright © 2023 Elsevier Masson SAS. All rights reserved.

Auteurs

Thibaud Damy (T)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France. Electronic address: Thibaud.damy@aphp.fr.

Amira Zaroui (A)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France.

Marie de Tournemire (M)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France.

Mounira Kharoubi (M)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France.

Romain Gounot (R)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Lymphoid Malignancies Unit, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Arnault Galat (A)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Soulef Guendouz (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Benoit Funalot (B)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Genetic Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Emmanuel Itti (E)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Nuclear Medicine, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Louise Roulin (L)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Lymphoid Malignancies Unit, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Vincent Audard (V)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Nephrology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Hepatology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Pascale Fanen (P)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Genetic Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Vincent Leroy (V)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Hepatology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Elsa Poulot (E)

Genetic Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Pathology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Karim Belhadj (K)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Lymphoid Malignancies Unit, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Sophie Mallet (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Gagan Deep Singh Chadah (G)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Violaine Planté-Bordeneuve (V)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Neurology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Thierry Gendre (T)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Neurology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Xavier Chevalier (X)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Rheumatology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Sandra Guignard (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Rheumatology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Emilie Bequignon (E)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Otorhinolaryngologist Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Sophie Bartier (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Otorhinolaryngologist Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Thierry Folliguet (T)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Cardiovascular Surgery Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

François Lemonier (F)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Lymphoid Malignancies Unit, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Etienne Audureau (E)

Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France.

Denis Tixier (D)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; DMU care, Henri Mondor Teaching Hospital, 94010 Creteil, France.

Florence Canoui-Poitrine (F)

Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France.

Jean-Pascal Lefaucheur (JP)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Neurophysiology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Sarah Souvannanorath (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Neurohistomyology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Francois-Jerome Authier (FJ)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Neurohistomyology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Steven Maupou (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Luc Hittinger (L)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France.

Valérie Molinier-Frenkel (V)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Immunology Department, Henri-Mondor Teaching Hospital, 94010 Creteil, France.

Jean-Philippe David (JP)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Department of Geriatrics, AP-HP, Hopitaux Henri-Mondor/Emile-Roux, 94456 Limeil-Brevannes, France.

Amaury Broussier (A)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France; Department of Geriatrics, AP-HP, Hopitaux Henri-Mondor/Emile-Roux, 94456 Limeil-Brevannes, France.

Silvia Oghina (S)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France.

Emmanuel Teiger (E)

French Referral Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute, Amyloidosis Mondor Network, all at Henri-Mondor Teaching Hospital, AP-HP, 94010 Creteil, France; Cardiology department, Henri-Mondor Teaching Hospital, 94010 Creteil, France; Clinical Epidemiology and Ageing (CEpiA) Geriatrics, Primary Care and Public Health, 94010 Créteil, France; Université Paris Est Creteil, Inserm, IMRB, 94010 Creteil, France.

Classifications MeSH