NPF Annual Survey

NPF is Listening

“To truly understand the impacts of psoriasis and PsA, we need to hear from the people who are experiencing this chronic disease,” says George Gondo, the Associate Director for Research for NPF. “The lessons we learn are incredibly valuable as we work for better treatment options, higher quality of life, and of course, someday, a cure.”

A persons hands shown on a laptop keyboard with an overlaid image of checkboxes and survey questions.

Since 1998, the National Psoriasis Foundation (NPF) has conducted an Annual Survey to better understand the true impacts of psoriatic disease on our community. Participants, chosen at random, provide key data and insights about living with psoriasis and/or psoriatic arthritis (PsA). A little time yields a lot of information that can help NPF and health care providers to shape a better future for all who experience psoriasis or PsA.

Your voice has made a difference!

Results from the Annual Survey help NPF address psoriatic disease and related issues by identifying the areas of need and guiding the scope and focus of our programs and support. Results also help NPF inform health care providers, psoriatic disease researchers, and even insurance companies as to the needs and struggles of those living with psoriasis and psoriatic arthritis.

Since 2020, data from our Annual Survey has directly led to nearly 30 presentations at leading scientific conferences about dermatology and psoriatic disease – including conferences held by the American Academy of Dermatology and the American College of Rheumatology.

These presentations have been further developed into 11 manuscripts published in leading peer-reviewed journals focusing on dermatology and/or psoriatic disease.

What does this mean?

This means your voice and perspective have been added to the evidence around psoriasis and can be used to inform the future of care for our community. For this, we thank you.

What Have We Learned?

According to the 2019 Annual Survey, 20.7 percent of respondents diagnosed with psoriatic disease suffered from moderate-severe depression, compared with 7.1 percent of the general population in the U.S. [1, 2]

In 2020, NPF launched the More Than Skin Deep: Mental Health Grant, funding projects focused on investigating the impact of psoriatic disease on mental health as well as interventions for addressing this important comorbidity.

Annual Survey Publications

Spencer RK, Jin JQ, Elhage KG, Davis MS, Hakimi M, Gondo G, et al. Association Between Poor Sleep and Myocardial Infarction in Patients with Psoriasis: Findings from a Cross-Sectional Study with the National Psoriasis Foundation. Dermatology and Therapy. 2023;13(11):2903-9. doi:10.1007/s13555-023-01045-4

Zundell MP, Ogdie-Beatty AR, Perez-Chada L, et al. Prevalence and Impact of Unacceptable Symptom State among Patients with Psoriatic Arthritis: Results from the National Psoriasis Foundation's 2019 Annual Survey. JID Innov. 2024;4(5):100292. Published 2024 Jun 6. doi:10.1016/j.xjidi.2024.100292

Gondo G, Mosca M, Hong J, Maverakis E, Merola JF, Armstrong AW, et al. Demographic and Clinical Factors Associated with Patient-Reported Remission in Psoriatic Arthritis. Dermatology and Therapy. 2022;12(8):1885-95. doi:10.1007/s13555-022-00770-6

Gondo GC, Bell SJ. 35064 Understanding the impact of depression on outcomes for patients with psoriasis: Results from a national survey. Journal of the American Academy of Dermatology. 2022;87(3):AB216. doi:10.1016/j.jaad.2022.06.896

Gondo G, Howard L. 43075 Differences in Patient-Reported Outcomes Among Biologic Users with Psoriasis and Hypertension or Obesity. Journal of the American Academy of Dermatology. 2023;89(3):AB37. doi:10.1016/j.jaad.2023.07.150

Gondo G, Boles J, Stone P, Howard L, Bell SJ. Prevalence of Utilization Management Policies Among the Psoriatic Disease Community: Results From the 2019 National Psoriasis Foundation Advocacy Survey. Journal of Psoriasis and Psoriatic Arthritis. 2020;5(04):2475530320956602. doi:10.1177/2475530320956602

Blauvelt A, Gondo GC, Bell S, Echeverría C, Schmitt-Egenolf M, Skov L, et al. Psoriasis Involving Special Areas is Associated with Worse Quality of Life, Depression, and Limitations in the Ability to Participate in Social Roles and Activities. Journal of Psoriasis and Psoriatic Arthritis. 2023;0(0):24755303231160683. doi:10.1177/2475530320956602

Enos CW, Galadima H, Saini AD, Bell S, Siegel M, Van Voorhees AS. Predictors of Biologic Use and Satisfaction Among Patients With Psoriasis: An Analysis and Geographic Visualization of the 2016 and 2017 National Psoriasis Foundation Annual Surveys. Journal of Psoriasis and Psoriatic Arthritis. 2020;5(3):100-8 https://journals.sagepub.com/doi/abs/10.1177/2475530320925553.

Gondo G, Domire J, Merola JF, Gottlieb A, Bell S. Understanding the impact of psoriatic disease on mental health: Results from the National Psoriasis Foundation Annual Survey. Journal of Investigative Dermatology. 2020;140(7):S61 https://doi.org/10.1016/j.jid.2020.03.467.

Bell S, Domire J, Merola JF, Gottlieb A, Gondo G. The impact of psoriasis and its associated comorbidities on quality of life: Results from the National Psoriasis Foundation Annual Survey. Journal of Investigative Dermatology. 2020;140(7):S67 https://doi.org/10.1016/j.jid.2020.03.504.

Gondo GC, Merola JF, Bell S, Blauvelt A. Decreased quality of life in people with psoriasis and psoriatic arthritis versus people with psoriasis alone: data from a national US survey. The British Journal of Dermatology. 2021. https://onlinelibrary.wiley.com/doi/10.1111/bjd.20657.

Gondo G, Bell S, Merola J, Gottlieb A. Differences in musculoskeletal impact on health among patients with psoriasis based on disease type, disease severity and undiagnosed psoriatic arthritis (PsA). Journal of Investigative Dermatology. 2021;141(5):S67 https://doi.org/10.1016/j.jid.2021.02.406.

Gondo G, Hadeler E, Brownstone N, Maverakis E, Merola J, Armstrong A, et al. Demographic and clinical factors associated with patient-reported remission in psoriasis. Journal of Investigative Dermatology. 2021;141(5):S71 https://doi.org/10.1016/j.jid.2021.02.434.

Gondo G, Mosca M, Hong J, Maverakis E, Armstrong A, Merola J, et al. Demographic and clinical factors associated with patient-reported remission in psoriatic arthritis. Journal of Investigative Dermatology. 2021;141(5):S51 https://doi.org/10.1016/j.jid.2021.02.313.

Gondo GC, Noe MH, Bell SJ, Ritchlin CT. Likelihood of COVID-19 Vaccination Among Individuals Living With Psoriatic Disease: Results From a Large Real-World Survey. Journal of Psoriasis and Psoriatic Arthritis. 2021;7(1):17-23 https://doi.org/10.1177/24755303211067822.

Gondo G, Hadeler E, Brownstone N, Maverakis E, Merola J, Armstrong A, et al. Demographic and Clinical Factors Associated with Patient-Reported Remission in Psoriasis. Dermatology and Therapy. 2022 https://doi.org/10.1007/s13555-022-00692-3.

Gondo G, Howard L, Friesel R, Gottlieb AB, Merola J. 257 Understanding health disparities among patients with psoriasis: Results from National Psoriasis Foundation annual surveys 2019 - 2021. Journal of Investigative Dermatology. 2022;142(8):S43 https://doi.org/10.1016/j.jid.2022.05.264.

References

1. Unpublished National Psoriasis Foundation 2019 Annual Survey Data.

2. 2017 National Survey on Drug Use and Health. National Institutes of Health.