The public health emergency provoked by the COVID-19 pandemic is paralleled by an economic and social crisis to which, according to research, patients with rheumatic and musculoskeletal diseases are particularly vulnerable.
The REUMAVID study “Assessment of the Impact of the COVID-19 Pandemic on People with Rheumatic Diseases in Europe” is a cross-sectional study conducted using an online patient survey aiming to evaluate patients with rheumatic and musculoskeletal diseases physical and psychological health, wellbeing and lifestyle habits, access to healthcare and treatment as well as access to information and supportive services, and how have they changed during the pandemic, from their perspective, using a holistic approach. This complements the already existing clinical body of data of how patients were affected irrespective of whether they contracted COVID-19.
REUMAVID is an international collaboration led by the Health & Territory Research group of the University of Seville, together with CEADE (Spanish Federation of Patient Organizations) and other patient organizations from seven European countries and, a multidisciplinary research team involving patient research partners, rheumatologists, psychologists, and researchers.
The COVID-19 pandemic has put an unprecedented strain on European healthcare systems that has led to a forced prioritization of the management of the pandemic over the routine management of chronic conditions like rheumatic diseases.
Several projects have been launched to collect clinical data on the impact of COVID-19, such as the EULAR-COVID-19 Database or the COVID-19 Global Rheumatology Alliance. However, there is a lack of information to understand the impact of the pandemic and related measures on people with rheumatic conditions as a whole.
Research on the experience of people with rheumatic diseases is crucial to make the voice of patients be heard and for decision-makers to adapt health policy as the pandemic develops.
REUMAVID is a study from patient to patients. Patient research partners are involved in all stages of the process: conception, study design, interpretation of data and dissemination.
REUMAVID starts in Spain, during the worst of the first wave of the pandemic. A state of alarm and total containment was declared in Spain in mid-March 2020. By early March, coronavirus deaths were rising to nearly 1,000 deaths per day.
It was at that time of greatest stress on the healthcare system that we thought of the people no one was talking about. Those people with complex chronic diseases who needed multidisciplinary care, how were they coping? Could they be managed by the GP, let alone the rheumatologist?
In need of answers, Health & Territory Research reached out to the president of the Spanish Federation of Spondyloarthritis Associations (CEADE). Pedro Plazuelo had talked with many patients during the lockdown period and identified their concerns. We started right away to develop a preliminary patient survey. We thought of limiting our study to Spain but soon, REUMAVID echoed to other patient organizations in Europe, who were interested to join the effort. That is how the REUMAVID working group was born.
We intended to launch the REUMAVID survey in Spain in early April, but first needed the approval of the ethics committee, which was delayed due to difficulties in meeting. The survey was finally launched on 8 April 2020, just after the peak of the first wave of the pandemic.
A similar situation with the ethics committees occurred in the other participating countries, delaying the start of the survey. The UK started the survey in mid-May, with Cyprus, Greece, Italy and France joining in during the third week. Portugal started the survey period on 7 June, at a time when the first wave was coming to an end in the country.
We closed the first phase of surveying in July the 15th 2020. By that time the situation in all participating countries had mostly stabilized (except in the UK where no lockdown measures were undertaken). For the REUMAVID working group, it was an intense moment in which we carried out preliminary data analysis to disseminate the results of the research. First, we presented the REUMAVID results for Spain in the Spanish Society of Rheumatology (SER) Conference 2020. Aggregated Pan-European results were presented at the Annual Meeting of the American College of Rheumatology, ACR Convergence. In this scientific congress, REUMAVID was very well received and was chosen to be presented as an oral presentation. Results for France and the UK were also presented in the conference of the Société Française de Rheumatologie (SFR) 2020, and the conference British Society of Rheumatology (BSR) 2021.
We keep making efforts disseminating REUMAVID results so its key messages reach patients, clinician, the general public and policy-makers. The results of the REUMAVID project are being used to make recommendations on how to best anticipate patient needs in times of crisis and support the design future response strategies that minimise negative consequences on the health and well-being of people with rheumatic diseases.