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

## TL;DR

This study shows how the pandemic disrupted healthcare for amyloidosis patients in France, especially those with light chain amyloidosis.

## Contribution

The study provides real-world insights into the differential impact of pandemic-related healthcare disruptions on two types of amyloidosis patients.

## Key findings

- 21.1% of patients experienced disrupted clinical follow-up during the pandemic.
- More light chain amyloidosis patients were hospitalized for COVID-19 compared to transthyretin patients.
- Light chain amyloidosis patients reported worse initial work-up experiences during the pandemic.

## Abstract

The 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.

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

This 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.

Overall, 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.

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

The online version contains supplementary material available at 10.1186/s13023-025-03859-1.