Assessment of the needs of patient organisations during the COVID-19 pandemic

 

As the SARS-CoV-2 (COVID-19) pandemic unfolded in 2020, Myeloma Patients Europe (MPE) became aware that the pandemic, as well as the restrictions imposed, were impacting the healthcare and lives of people with myeloma and AL amyloidosis, and their caregivers in multiple ways. The crisis also brought unique challenges to our member organisations in connecting with and supporting their patient communities.

To understand how we could best help, MPE conducted research to learn more about the impact of the pandemic and lockdown measures, and the needs of patients, carers and member organisations. A survey of 28 members in April 2021 revealed a significant emotional and psychosocial impact, as well as treatment delays and problems accessing wider healthcare and support services in some countries. Although members were adapting, some had concerns over their financial resilience and future organisational sustainability.

This report summarises the main issues and challenges European myeloma patient organisations have faced during the current COVID-19 pandemic. Thank you to the representatives of MPE member organisations for their time and contributions to this survey.

Read the full report here.