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Responding to Your Needs

NPF uses patient surveys to inform their response and support efforts during the COVID-19 pandemic.

As SARS-CoV-2, the virus that causes COVID-19 infection, started to spread, the National Psoriasis Foundation (NPF) received a flood of questions from our patient community. How would getting COVID-19 impact those who have psoriatic disease? How would certain treatments affect a person’s likelihood of getting the virus? Would stopping their treatment help their immune system fight SARS-CoV-2? NPF was not the only one getting these questions.

Faced with a new virus that would impact our community, NPF responded rapidly by forming the NPF COVID-19 Task Force. The Task Force is comprised of experts in dermatology and rheumatology, but also advisors from specialty areas such as infectious disease, pulmonology and pediatrics. The charge of the task force was to provide evidence-based information and guidance to support patients and providers on managing psoriatic disease and protecting themselves from COVID-19 infection. The Task Force provided guidance about COVID-19, which was published in the Journal of the American Academy of Dermatology [1] and  can be found on our COVID-19 Resource Center. Additionally, NPF wanted to hear from more of our patient community to understand their thoughts, concerns and experiences with COVID-19.

Andrew Blauvelt, M.D., dermatologist and President of the Oregon Medical Research Center, pointed out that a common concern was whether or not biologics would increase the patient’s risk of becoming infected with SARS-CoV-2. “Back in March, little was known on this topic, but I suspected most biologics would not affect susceptibility of SARS-CoV-2 infection based on how these drugs work in the body. Because of this, I instructed my patients to stay on their medications,” says Dr. Blauvelt.

NPF conducted two online surveys of patients in our community, efforts which were led by George Gondo, NPF’s patient-centered research manager. The first survey, conducted in April 2020, focused on what patients knew and thought of COVID-19, the health impacts of COVID-19 on those with psoriatic disease and reactions to the pandemic. The follow-up survey, conducted in June 2020, focused on the patient perspective on society reopening. With data from the initial and follow-up surveys, we got a glimpse into how the COVID-19 pandemic was uniquely impacting our community.

Concern of COVID-19

With no surprise, both surveys showed that patients with psoriatic disease were concerned about how COVID-19 would impact their health and viewed COVID-19 as a personal threat to their health. By June, patients reported higher knowledge about the impact of COVID-19 and less concern of their treatment increasing their risk of getting COVID-19. Although patients were less concerned by June, patients still reported engaging in various protective measures (staying home more, social distancing, washing hands, wearing a face covering, etc.) to protect themselves and others from COVID-19, which align with guidelines from the Centers for Disease Control and Prevention (CDC).

In addition, health care providers know more now about how certain treatments impact one’s likelihood of catching SARS-CoV-2. “The good news is that now, as we’ve gained more insight into this issue, most evidence suggests that biologics don’t seem to affect SARS-CoV-2 susceptibility or worsen COVID-19 disease following viral infection,” says Dr. Blauvelt.

Take away: Stay informed about how SARS-CoV-2 spreads and how to protect yourself. The more you know, the better you can understand your risk and know how to best protect yourself and others. Also, remember that just as your understanding of SARS CoV-2 is improving, so is that of your health care providers.

Communication with Providers

Another finding was the lack of communication from health care providers about COVID-19 related risks associated with psoriasis and psoriatic arthritis treatments. Data show most providers did not talk about COVID-19 related risks with treatments for psoriatic disease (biologics, oral systemics, topicals or phototherapy). The lack of communication could be due to many different factors.

Take away: It is okay to ask your health care provider about an emerging health concern, even if you know there are limited data available. Asking your question may lead to a productive conversation about treatment options or what is known from science.

Telehealth

Since the start of the COVID-19 pandemic, many health care providers have quickly adapted to offer telehealth services instead of or in addition to in-person visits. Half of respondents reported being notified that their health care providers would be conducting visits virtually. Although some providers and patients prefer in-person visits to telehealth visits, respondents reported high levels of satisfaction with telehealth visits, which were comparable with in-person visits. We will have to see if providers continue offering telehealth after the COVID-19 pandemic ends or if insurers will continue to cover these visits, but it is reassuring that patients are feeling satisfied with this safe and alternative way of receiving care.

Take away: If you are not comfortable going to in-person medical appointments, ask your provider if telehealth is an option. You might find it to be helpful, until you feel more comfortable going back to the office.

Emotional Health

Feelings of anxiety and depression have increased for many of us since the pandemic began. Results from our surveys showed that individuals with psoriatic disease report similar levels of depression and anxiety as the US population during the pandemic. Based on data taken from the U.S. Census Household Pulse Survey, the rates of depression and anxiety in the U.S. population during the pandemic are 27% and 33%, respectively. [2] Normally, the rates of anxiety and depression experienced by people with psoriatic disease are much higher than the U.S. population. [3],[4]

If you are experiencing signs of anxiety or depression, talk with your health care provider. Your provider can help find solutions that are right for you. Remember that mental health conditions are real, common and treatable.

Take away: Although life is hectic, try to find a few minutes every day to engage in a relaxing activity, exercise, or other self-care activity to reduce stress and improve mood. For you, this may mean limiting your exposure to the news, taking physically distant and masked walks with a friend or finally reading the stack of books that have been piling up on your nightstand. If you are looking for other resources on emotional health, visit our website to request NPF’s Emotional Impacts Quick Guide.

Lessons learned

Lessons learned from the surveys will inform how NPF approaches unexpected events in the future. Gondo mentions that patient advocacy groups, such as NPF, “need to be proactively scanning the public health environment and thinking about how novel diseases may impact our community, what information gaps exist and how to best disseminate information to address them.” It is hard to predict what will come in the future, but NPF is committed to addressing emerging concerns and sharing accurate information with our community as quickly and thoughtfully as possible.

References:

1.       Gelfand JM, Armstrong AW, Bell S, et al. National Psoriasis Foundation COVID-19 Task Force Guidance for Management of Psoriatic Disease During the Pandemic: Version 1 [published online ahead of print, 2020 Sep 4]. J Am Acad Dermatol. 2020;83(6):1704-1716. doi:10.1016/j.jaad.2020.09.001

2.       National Center for Health Statistics at the Centers for Disease Control and Prevention. https://www.cdc.gov/nchs/covid19/health-care-access-and-mental-health.htm. Accessed 7/9/2020.

3.       Gondo G, Domire J, Merola JF, Gottlieb A, Bell A. 459 Understanding the impact of psoriatic disease on mental health: Results from the National Psoriasis Foundation Annual Survey. Journal of Investigative Dermatology. 2020; 140(7). doi:10.1016/j.jid.2020.03.467 Accessed 9/10/2020.

4.       Brody DJ, Pratt LA, Hughes J. Prevalence of depression among adults aged 20 and over: United States, 2013–2016. NCHS Data Brief, no 303. Hyattsville, MD: National Center for Health Statistics. 2018. cdc.gov/nchs/products/databriefs/db303.htm Accessed 11/3/2020.

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