Patient Experience Survey Summary Data
The COVID-19 Rheumatology Patient Experience Survey is now CLOSED.
We want to thank all of you, our patients, patient organizations, and collaborators, for helping us better understand how the COVID-19 pandemic has impacted you and many around the world living with a rheumatic disease.
With your participation, we have reached over 108 countries, all 50 US states, accumulating over 14,000 responses in just under 12 months.
Below are two figures showing the geographic distribution of the responses (darker colors represent more responses).
These survey responses are integral to inform healthcare providers about the day to day quality of life for patients with rheumatic diseases during this pandemic. Your insights will inevitably help to foster improved communication of disease severity, concerns, and fears between patients and their healthcare providers to enhance their quality of care.
The following are some of the notable publications/editorials/accomplishments that have come out of this patient experience survey:
Presentations:
- American College of Rheumatology (ACR) 2020 convergence: We presented 5 posters and 2 oral abstracts, along with a community hub featuring 2-hour long discussions with the GRA patient board.
- Canadian Rheumatology Association (CRA) 2021 scientific meeting: We presented 5 posters (abstract #44 – 47, 79) using data from the patient experience survey.
Publications and editorials regarding the survey development:
- Arthritis Care & Research: Capturing Patient-Reported Outcomes During the COVID-19 Pandemic: Development of the COVID-19 Global Rheumatology Alliance Patient Experience Survey
- Nature Reviews Rheumatology: Removing barriers and disparities in health: lessons from the COVID-19 pandemic
- Nature Career Column: Putting patients at the centre of COVID-19 research
- European Journal of Rheumatology: Conducting research in a pandemic: The power of social media
Comprehensive plain language summaries organized by the GRA patient board and patient partners to help translate the GRA research findings into lay terms. With more to come!
Media coverage:
- Medscape: COVID-19-Related HCQ Shortages Affected Rheum Patients Worldwide (November 05, 2020)
- Science daily: Patients reported international hydroxychloroquine shortages due to COVID-19 (November 6, 2020)
- Healio: Covid19 antimalarial shortages affected rheumatology patients physical, mental health (November 7, 2020)
- Medicine Matters: COVID-19 may be rare in children with rheumatic diseases (November 9, 2020)
We will be pushing out more publications and lay summaries of the data collected from the survey responses outlining characteristics and analysis in the coming months. We could not have reached this milestone without your collective effort. We are committed to sharing with you the research that you have helped us collect!
The GRA will continue to support the rheumatologic community dialogue, with a view to enhancing trust and cooperation!