Evidence map›Paper›PMID 40629395›Full record

ArticleOrphanet journal of rare diseases2025

The impact of limited healthcare access among patients with light chain and transthyretin amyloidosis: real-world survey during COVID-19 lockdown period in France.

D Guijarro, A Jobbe-Duval, S Aguilhon, F Bauer, E Donal, J C Eicher, J Jeanneteau, B Gellen, D Kenizou, O Lairez and 11 more

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Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

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3 · Its place in the literature

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No citing paper in PubMed yet.

4 · The record

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5 · Who and what money

Authors and funding

21 authors.

D GuijarroCardiovascular Institute, Groupe Hospitalier Mutualiste de Grenoble, Grenoble, France. damien.guijarro@gmail.com.ORCID http://orcid.org/0000-0002-3202-9831
A Jobbe-DuvalHeart Failure Service, Assistance and Transplantation, Hospital Louis Pradel, Bron, France.
S AguilhonCardiology, University Hospital Montpellier, Montpellier, France.
F BauerCardiology, University Hospital Charles Nicolle, Rouen University Normandy, Rouen, France.
E DonalCardiology, University Hospital Rennes, Pontchaillou Hospital, Rennes, France.
J C EicherCardiology, University Hospital Dijon, Dijon, France.
J JeanneteauCardiology, Clinique Saint Joseph, Trélazé, France.
B GellenCardiology, Polyclinique de Poitiers, Poitiers, France.
D KenizouCardiology, Hospital Emile Muller, Mulhouse, France.
O LairezCardiology, University Hospital,Toulouse Rangueil Hospital, Toulouse, France.
B LequeuxCentre Cardio-Vasculaire, CHU de Poitiers, Site de La Milétrie, Poitiers, France.
D LegalloisDepartment of Cardiology, Normandy University, UNICAEN, INSERM U1086 ANTICIPE, CHU de Caen-Normandy, Caen, France.
P RéantCardiology, University Hospital de Bordeaux, Bordeaux, France.
M SalvatCardiology, University Hospital Grenoble, Grenoble, France.
M F SerondeCardiology, University Hospital Besançon, Besançon, France.
M KharoubiCardiology Department and French National Reference Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute and Clinical Investigation Centre 1430 at University Hospital Henri-Mondor AP-HP, and IMRB, INSERM, University Paris Est Creteil, 94010, Créteil, France.
A WhereatSpeak the Speech Consulting, Asnières-sur-Seine, France.
A FarrugiaAssociation Française Contre l'Amylose, Marseille, France.
C TaiebEmma Clinic, Fontenay-sous-Bois, France.
A ZarouiCardiology Department and French National Reference Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute and Clinical Investigation Centre 1430 at University Hospital Henri-Mondor AP-HP, and IMRB, INSERM, University Paris Est Creteil, 94010, Créteil, France.
T DamyCardiology Department and French National Reference Centre for Cardiac Amyloidosis, GRC Amyloid Research Institute and Clinical Investigation Centre 1430 at University Hospital Henri-Mondor AP-HP, and IMRB, INSERM, University Paris Est Creteil, 94010, Créteil, France.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe containment strategies during the COVID-19 pandemic between December 2019 and 2022 significantly disrupted the healthcare system. Cardiac amyloidosis has a poor prognosis and requires frequent follow-up in reference centres.

objectivesTo assess the impact of limited access to healthcare on the patient burden and care pathway in France.

methodThis cross-sectional, self-questionnaire survey was conducted between June and October 2021 among cardiac amyloidosis patients registered at Expert Centres of the French Amyloidosis Network.

resultsOverall, 1015 patients participated of whom, 229 had light chain amyloidosis, 786 had transthyretin amyloidosis. Disrupted clinical follow-up was reported in 21.1% of respondents, 15% had follow-up visits postponed. No alternative follow-up option was proposed for 45% of these patients. Few patients reported treatment discontinuation (Light chain (1.1%), transthyretin (1.3%). Significantly more newly diagnosed light chain (37.9%) than transthyretin amyloidosis patients (30.4%) reported the containment strategies caused a poor initial work-up experience (p = 0.034). Among those patients who reported a COVID19 infection (9.7%) more patients with light chain amyloidosis (75.0%) were hospitalized than transthyretin amyloidosis (37.1%), (p = 0.006). Only 587 (57.0%) patients answered vaccination question, most (92.0%) reported having been vaccinated.

conclusionPatients with light chain amyloidosis reported having had a higher impact to their care management than transthyretin amyloidosis patients during the COVID19 pandemic containment periods.

Indexed as

Amyloid Neuropathies, FamilialCOVID-19Health Services AccessibilityImmunoglobulin Light-chain AmyloidosisAdultAgedAged, 80 and overCross-Sectional StudiesFemaleFranceHumansMaleMiddle AgedSARS-CoV-2Surveys and QuestionnairesBurdenCardiac amyloidosisCare pathwayCOVID-19Patient experienceSelf- reported questionnaire

Identifiers

PMID40629395
PMCPMC12235858

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.