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

BACKGROUND

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.

OBJECTIVES

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

METHOD

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.

RESULTS

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.

CONCLUSION

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.