Project: Evaluation of the Impact of COVID-19 Pandemic from the Perspective of People with Rheumatic Diseases (REUMAVID)
The expansion and evolution of the COVID-19 pandemic in Europe has forced governments to adopt a series of measures to contain the spread of the virus and reduce the burden of care in hospitals. These unprecedented measures are having a major impact on the lives of all citizens, and in particular those suffering from disease. During this pandemic, there has been a great demand for information on the impact of COVID-19 on people with rheumatic diseases, and despite the efforts of scientific societies to provide recommendations, there is little evidence to support these decisions. Thus, the scientific community has responded by initiating research on the COVID-19 pandemic focused on understanding important clinical questions (e.g., how to treat and/or manage patients during the pandemic) from a physician’s perspective. However, the influence of COVID-19 extends beyond the clinical, affecting other aspects caused by the pandemic and confinement measures (e.g., access to healthcare and treatments, changes in daily life, contact with the outdoors, impact on well-being and mental health) have not been sufficiently studied. It is equally important to understand these areas as they affect the health and quality of life of people living with rheumatic diseases. The REUMAVID study aims to generate scientific evidence, from a patient perspective and provide knowledge to support evidence-based solutions to safeguard wellbeing, quality of life and access to treatment in the future development of the COVID-19 pandemic.
This is an international collaboration led by the Health & Territory Research (HTR) group at the University of Seville, together with CEADE (Spanish Coordinator of Spondyloarthritis Associations), and other patient organizations from seven European countries and a multidisciplinary research team involving patient representatives, rheumatologists, psychologists and researchers.
Through an on-line survey, data will be collected from adults living with rheumatic diseases in Cyprus, France, Greece, Italy, Portugal, Spain and the United Kingdom. This information collection will be conducted in two phases: an initial survey during the first peak of the COVID-19 pandemic (spring 2020), and a second survey will be shared during the expected second peak, or as a follow-up if a second peak does not occur (autumn 2020). The questionnaire contains information on the key areas that matter most to patients in relation to pandemic COVID-19 and confinement (see Primary and Secondary Outcomes) and includes a number of validated tools.
This study will provide relevant data to potentially support the design of future response strategies and resources that minimize the negative consequences of the COVID-19 pandemic on the health and well-being of people with rheumatic diseases. In addition, using REUMAVID data, resources will be created to support patient organizations, scientific societies, and clinicians to better meet the needs of people living with rheumatic diseases throughout the pandemic by improving collaboration between the medical community and patients.
This study will help prepare not only for future waves of the COVID-19 pandemic, but also for other crisis situations that may arise in the future (e.g., natural disasters, food crises, political conflicts, civil wars, etc).
Objective
The objective of REUMAVID is to assess the impact of the COVID-19 pandemic and confinement measures on well-being, mental health, disease activity and function, access to health care and treatment, support services, wellbeing, mental health, and the fears and hopes of people living with rheumatic diseases.
Participants
Collaboration with patient organizations and patient engagement is essential to the REUMAVID project. Patient organizations are involved in all stages of the project, including study design, translation of the questionnaire, survey implementation, patient recruitment, and interpretation and dissemination of results. The following patient organizations are part of the REUMAVID initiative in each of the seven countries:
- Cyprus: CYPLAR (Cyprus League Against Rheumatism).
- France: AFLAR (Association Française de Lutte Anti-Rhumatismale).
- Greece: ELEANA (Hellenic League Against Rheumatism).
- Italy: APMARR (Associazione Nazionale Persone con Malattie Reumatologiche e Rare).
- Portugal: LPCDR (Liga Portuguesa contra as Doenças Reumáticas).
- Spain: CEADE (Coordinadora Española de Asociaciones de Espondiloartritis), FEP (Foro Español de Pacientes), UNiMiD, LIRE (Liga Reumatológica Española), LIRA (Liga Reumatológica Andaluza), Liga Reumatológica Catalana y Liga Reumatológica Gallega.
- United Kingdom: NASS (National Axial Spondyloarthritis Society), NRAS (National Rheumatoid Arthritis Society) and Arthritis Action.
