The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

Abstract

During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.

Fig. 1. Clinical challenges faced by patients and health-care providers during the COVID-19 pandemic.

Discussions within the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) have identified a number of clinical challenges faced by patients with rare connective tissue diseases (rCTDs) and the health-care professionals treating them during the COVID-19 pandemic. Some concerns relate to the fear and/or consequences of these patients contracting COVID-19, whereas others reflect changes to clinical protocols implemented to prevent or control SARS-CoV-2 transmission in clinics.

Fig. 2. Organizational challenges faced by health-care clinics during the COVID-19 pandemic.

Health-care systems are under sometimes severe strain owing to the need to care for patients with COVID-19, which has had a knock-on effect for the management of other patients, including those with rare connective tissue diseases (rCTDs). Health-care providers within the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET) have faced many organizational challenges during the pandemic, many of which have arisen as a consequence of restrictions imposed on clinics in order to prevent and control SARS-CoV-2 transmission.