- PsoProtect and PsoProtectMe are global registries established to understand the impact of the COVID-19 pandemic on people with psoriasis.
- PsoProtect received 1,652 clinician-reported cases of COVID-19 in people with psoriasis across the globe.
- 5,479 people with psoriasis completed PsoProtectMe’s self-report survey.
TIMELINE OF KEY ACHIEVEMENTS
March 11, 2020: COVID-19 is declared a pandemic by the World Health Organization.
March 27, 2020: PsoProtect launches as an international registry for clinicians to report cases of COVID-19 in psoriasis.
May 4, 2020: PsoProtectMe launches as an international self-report registry for people with psoriasis.
Factors Associated with Adverse COVID-19 Outcomes in Patients with Psoriasis—Insights From a Global Registry–based Study. Mahil, S.K., Dand, N., Mason, K.J., et al. Allergy Clin Immunology. 2021 Jan; 147(1):60-71. doi: 10.1016/j.jaci.2020.10.007.
Describing the Burden of the COVID-19 Pandemic in People with Psoriasis: Findings From a Global Cross-sectional Study. Mahil, S.K., Yates, M., Yiu, Z.Z.N., et al. J Eur Acad Dermatol Venereol. 2021 June. doi: 10.1111/jdv.17450.
Risk-mitigating Behaviours in People with Inflammatory Skin and Joint Disease During the COVID-19 Pandemic Differ by Treatment Type: A Cross-sectional Patient Survey. Mahil, S.K., Yates, M., Langan, S.M., et al. Br J Dermatol. 2021, Dec; 185:80-90. Doi: 10.1111/bjd.19755.
Association Between Tumor Necrosis Factor Inhibitors and the Risk of Hospitalization or Death Among Patients With Immune-Mediated Inflammatory Disease and COVID-19. Izadi Z, Brenner EJ, Mahil SK, et al. JAMA Netw Open. 2021 Oct 1;4(10):e2129639. doi: 10.1001/jamanetworkopen.2021.29639. PMID: 34661663; PMCID: PMC8524310.
Characteristics Associated with Poor COVID-19 Outcomes in People with Psoriasis, Psoriatic Arthritis and Axial Spondyloarthritis: Data from the COVID-19 PsoProtect and Global Rheumatology Alliance Physician-reported Registries. Machado PM, Schäfer M, Mahil SK, et al. Ann Rheum Dis. 2023 May;82(5):698-709. doi: 10.1136/ard-2022-223499. Epub 2023 Feb 14. PMID: 36787993; PMCID: PMC10176347.
Nonadherence to Systemic Immune-modifying Therapy in People with Psoriasis During the COVID-19 Pandemic: Findings from a Global Cross-sectional Survey. Quirke-McFarlane S, Weinman J, Cook ES, et al. Br J Dermatol. 2023 Apr 20;188(5):610-617. doi: 10.1093/bjd/ljac144. PMID: 36763806.
Vaccine Hesitancy and Access to Psoriasis Care During the COVID-19 Pandemic: Findings from a Global Patient-reported Cross-sectional Survey. Bechman K, Cook ES, Dand N, et al. Br J Dermatol. 2022 Aug;187(2):254-256. doi: 10.1111/bjd.21042. Epub 2022 May 3. PMID: 35104366; PMCID: PMC9545500.
When the COVID-19 pandemic spread across the globe in early 2020, dermatologists and patients alike had many concerns and questions about COVID-19 and psoriasis. To begin to address these, dermatologists and researchers created PsoProtect and PsoProtectMe — two global registries aimed at understanding the impact of the pandemic on people with psoriasis.
Co-directors of PsoProtect and PsoProtectMe are Catherine Smith and Satveer Mahil, Consultant Dermatologists at St. John’s Institute of Dermatology, Guy’s and St. Thomas’ NHS Foundation Trust, and King’s College London, UK. Here, they speak about the data collection process and findings from PsoProtect and PsoProtectMe.
Creating the PsoProtect Registry
PsoProtect emerged early in the pandemic in response to a need for data. With concerns about the risks of adverse COVID-19 outcomes in people with psoriasis, especially those taking immune-modifying medications, timely and resource-efficient data collection was critical. Alongside colleagues, including IPC Past President Jonathan Barker and IPC Honorary Founder Chris Griffiths, the idea for PsoProtect began.
“We set up PsoProtect with a fantastic group of dermatologists, data scientists, epidemiologists, and patient partners,” says Dr. Mahil. “It was a rapid, collaborative effort. We benefitted from the support of leading psoriasis experts in our International Scientific Advisory Board, who helped to shape our research strategy and critique the data as it started to come in. The first question that we set out to answer was, ‘What are the risk factors associated with severe COVID-19 in people with psoriasis?’”
The PsoProtect team created a short online case report form where physicians could report cases of COVID-19 in psoriasis. The form was modelled on parallel research efforts in other immune-mediated diseases such as SECURE-IBD and the COVID-19 Global Rheumatology Alliance. It collected demographic variables about patients, their comorbidities, BMI, and the medicines they were taking for psoriasis. Dissemination to clinicians was facilitated by the IPC and other partner professional organizations of PsoProtect. The data were rapidly analyzed and reviewed by the PsoProtect data team including Nick Dand, Kayleigh Mason, Zenas Yiu and James Galloway to start to understand trends during the pandemic (see ‘Lessons Learned and Shared’ below).
Understanding the Patient Perspective
Another critical unknown was the experience of people living with psoriasis during the pandemic, so the PsoProtect team also set up a sister registry, PsoProtectMe, to collect data directly from patients. The research team wanted to understand a range of issues affecting people with psoriasis:
- Were they stopping their medications for psoriasis? If so, why?
- What happened to people’s psoriasis during the pandemic — was it getting worse?
- How was the pandemic affecting people’s mental health and, in turn, their psoriasis?
“With PsoProtectMe, we asked anyone with psoriasis to provide their information whether or not they had COVID-19,” explained Dr. Mahil. “We wanted to understand their experiences of the pandemic — not just an experience of having COVID-19.”
Lessons Learned and Shared
The data collected through PsoProtect and PsoProtectMe registries was instrumental to dermatologists’ growing understanding of COVID-19 and psoriasis. The data has informed several published pieces of research. Here are some of the findings.
Medications and Risk-Mitigating Behaviors
PsoProtect identified that established risk factors in the general population were associated with severe COVID-19 in people with psoriasis such as being older, male and having comorbidities.
Findings on medications from the first data cut of 374 cases in 2021 were reassuring: while 89% of patients reported to PsoProtect were receiving a systemic immune-modifying medication for their psoriasis, 93% fully recovered from COVID-19. These data also suggested those taking a non-biologic systemic drug for their psoriasis had a greater risk of adverse COVID-19 outcomes than those taking a biologic. “We were somewhat surprised at this finding, but it did align with reports from similar inflammatory bowel disease and rheumatology registries” admitted Prof Smith. “We had the benefit of data from PsoProtectMe, which suggested that people taking biologics may be more stringent in their risk-mitigating behavior (i.e. shielding) than those not taking biologics. So this could be a possible explanation for some of the trends we saw.”
The overall reassuring data that the PsoProtect team and other investigators collected around immune-modifying medications helped to inform clinical practice guidelines, such as statements released by the IPC and the National Psoriasis Foundation (NPF). These statements encouraged people to continue to take their medications for psoriasis during the pandemic and flagged those risk factors associated with severe COVID-19.
The Pandemic and Mental Health
42% of PsoProtectMe respondents reported that their psoriasis got worse during the pandemic. Since validated screens for depression and anxiety were embedded in PsoProtectMe, the team were able to identify that a positive screen for depression or anxiety was associated with worsening psoriasis during the pandemic.
“There was data emerging on the impact of the pandemic on mental health in the general population,” says Dr. Mahil. “And we know that anxiety and depression are already prevalent in people with psoriasis. So, through PsoProtectMe, we were able to highlight the importance of providing support to address and lessen the mental health burden in this vulnerable population.”
During the pandemic, IPC Board Member Professor Catherine Smith points to the isolation many people with psoriasis felt and how the PsoProtectMe registry may have helped to connect them. “This sort of citizen science or community project was a powerful approach,” she says, “It highlighted the enormously valuable role that the partner patient organisations played – especially IFPA and the Psoriasis Association – in bringing this psoriasis community together.”
What’s Next for PsoProtect?
While the data collection phase of the PsoProtect project has ended, Dr. Mahil and Prof Smith explain that they are excited to build on their learnings from PsoProtect in their next project.
“We’ve learned a lot through PsoProtect and PsoProtectMe about how to collect data,” Dr. Mahil says. “We will be setting up a new project very soon: a longitudinal data collection through an online self-report portal that seeks to understand disease trajectory and how and why psoriasis changes over time. We’ll ask patients to check in every three months using the portal.”
Prof Smith explains, “We hope that by seeking consent from participants to link with other datasets – such as their health record – as well as self-sampling, we can learn more about predictors of disease severity, multimorbidity, and treatment outcomes over time.”