Understanding Patient Priorities for Psoriatic Disease Research

Abstract

Background: There have been significant advances in psoriatic disease research in recent years, leading to better understanding of genes involved and increased treatment options.

Purpose: To guide current research priorities for psoriatic disease, we held an interactive session on this topic consisting of a presentation and small group discussion with National Psoriasis Foundation (NPF) patient-volunteers, their family members, and NPF staff at the NPF 2025 IMPACT Volunteer Leadership Summit.

Research design: We presented a list of 10 psoriatic research topics and asked attendees to rate the priority of each topic on a 9-point scale. The session also included breakout groups where attendees discussed research areas most important to them.

Study Sample: National Psoriasis Foundation (NPF) patient-volunteers, their family members, and NPF staff at the NPF 2025 IMPACT Volunteer Leadership Summit.

Data collection and/or Analysis: Attendees completed an online REDCap survey which was then analyzed by the study team.

Results: “Improving treatment for psoriatic disease and achieving remission” was the research topic that received the highest overall rating. We also learned of research topics of high patient interest not included on our original list of 10 topics, including research exploring the relationship between psoriatic disease and hormones, infertility, and menopause. Increased research on pediatric psoriatic disease and research initiatives focused on increased patient and provider education were topics of importance to attendees as well.

Conclusion: Overall, these findings may help guide future patient-centered research agendas in psoriatic disease.

Introduction

Our understanding of psoriatic disease has increased exponentially due to research advancements. The National Psoriasis Foundation (NPF) has funded key psoriatic research, including patient-driven research initiatives such as Citizen Pscientist, ¹ which allows patients to test their own hypotheses using a NPF database. In 2016, the NPF developed a patient-centered research agenda to guide organizational goals and funding. We sought to develop an updated patient-driven guide based on an interactive session at the NPF 2025 IMPACT Volunteer Leadership Summit, where patient-volunteers, family, and staff discussed and ranked areas of psoriatic research most important to them. Findings may help guide future patient-prioritized research.

Methods

We conducted a thematic literature review on articles discussing patient priorities in regards to psoriasis research.^1-5 We also consulted the NPF’s mission statement, ⁶ 5-year strategic plan, ⁷ and key research initiatives. ⁸ From these findings, we compiled a list of 10 key research topics and presented an overview at the NPF Impact Summit. We then led breakout groups of ∼15 NPF volunteers, who were psoriatic disease patients, patient friends or family, or NPF affiliates. Attendees were asked to write down research topics (either ones presented on, or others not discussed) most important to them and why. Attendees then discussed their chosen topics and rationale, while an event volunteer took notes. All written and electronic notes were collected. Finally, we distributed an online REDCap survey asking attendees to rate 10 research topics on a 9-point scale (1 = lowest priority, 9 = highest priority). The survey also included 8 demographic questions, 7 psoriatic history questions, and a free-response question for additional input.

Results

Of 42 attendees, 35 completed the REDCap survey with their demographics summarized in Table 1. 26 survey respondents had psoriasis, with clinical features described in Table 2. The research topics rated of highest importance were “Improving treatment for psoriatic disease and achieving remission,” “Psoriatic comorbidities,” and “Understanding the molecular basis of psoriasis” (Table 3). Most patient-shared research topics fit into our list of 10 topics, with a few exceptions (Table 4). A word cloud was developed from the REDCap free response questions and breakout session notes (Figure 1).

Table 1.

Demographics of 2025 NPF IMPACT Summit Attendees.

Demographics of 2025 NPF IMPACT Summit Attendees
NPF Impact Affiliation
Has psoriasis	74.3% (n = 26)
Family member or friend has psoriasis	14.3% (n = 5)
Supports care for those with psoriasis	11.4% (n = 4)
Median age	47 years
Gender
Woman	82.9% (n = 29)
Man	17.1% (n = 6)
Race
White	74.3% (n = 26)
Black/ African American	5.7% (n = 2)
Asian	20.0% (n = 7)
Ethnicity
Hispanic	8.8% (n = 3)
Non-Hispanic	91.2% (n = 31)
Unknown or missing	2.9% (n = 1)
United States Geographical region
Midwest	14.3% (n = 5)
Northeast	11.4% (n = 4)
Southeast	28.6% (n = 10)
Southwest	28.6% (n = 10)
West	11.4% (n = 4)
Unknown or missing	5.7% (n = 2)
Highest level of education completed
High school	20.0% (n = 7)
Associate’s degree	5.7% (n = 2)
Bachelor’s degree	42.9% (n = 15)
Master’s degree	17.1% (n = 6)
Graduate degree (MD, JD, PhD, etc.)	14.3% (n = 5)
Estimated annual household income
< $50,000	14.3% (n = 5)
$50,000-$100,000	14.3% (n = 5)
>$100,000	71.4% (n = 25)
Type of health insurance
Preferred provider organization (PPO)	62.9% (n = 22)
Health maintenance organization (HMO)	20.0% (n = 7)
Point of service (POS)	5.7% (n = 2)
Private insurance	8.6% (n = 3)
Medicare/Medicaid	0% (n = 0)
Other	5.7% (n = 2)

Table 2.

Psoriasis History of 26 Psoriatic Disease Patients Who Were 2025 NPF IMPACT Summit Attendees.

Psoriasis History of 2025 NPF IMPACT Summit Attendees
Median age of psoriasis onset	19 years
Median age of diagnosis	19.5 years
Subtypes of psoriasis
Plaque	84.6% (n = 22)
Palmoplantar	7.7% (n = 2)
Pustular	15.4% (n = 4)
Guttate	15.4% (n = 4)
Genital	11.5% (n = 3)
Erythrodermic	15.4% (n = 4)
Inverse	30.8% (n = 8)
Severity of psoriasis at its worst
Almost clear	7.7% (n = 2)
Mild	7.7% (n = 2)
Moderate	30.8% (n = 8)
Severe	53.8% (n = 14)
Diagnosis of psoriatic arthritis	61.5% (n = 16)
Treatment ever used
Prescription topicals	96.2% (n = 25)
Phototherapy or laser	50.0% (n = 13)
Oral immunomodulator pills	57.7% (n = 15)
Biologic injectables	88.5% (n = 23)
Other	7.7% (n = 2)

Table 3.

Average Rating of Priority of Psoriatic Research Topic Among NPF IMPACT Summit Attendees.

Highest priority	Average rating	Psoriatic Disease Research Topic
	8.23	Improving treatment for psoriatic disease and achieving remission
	8.03	Psoriatic comorbidities (eg, cardiovascular and mental health)
	7.66	Understanding the molecular basis of psoriasis (eg, genetics, microbiome, etc)
	7.64	Psoriatic disease prevention and early diagnosis
	7.46	Factors affecting psoriatic disease progression
	7.26	Improving access to dermatologic and rheumatologic care, underserved populations
	7.09	Role of lifestyle factors (eg, nutrition, sleep, exercise, social connection, and stress)
	7.09	Advancing personalized medicine in psoriatic disease
	5.77	Role of environment (eg, air pollution, chemical exposures, global warming)
Lowest priority	5.2	Digital health and artificial intelligence in diagnosis and management

Table 4.

Number of Occurrences Each Research Topic was Mentioned in Breakout Session Notes, Attendees Handwritten Notes, and Free Response Questions on REDCap Survey, as Well as Representative Example Questions for Each Topic.

Number of Occurrences	Topic	Example
31*	Psoriatic comorbidities (eg, cardiovascular and mental health)	“Genetic markers for comorbidities”
29	Improving treatment for psoriatic disease and achieving remission	“How can we make an effective psoriatic arthritis medication?”
21	Psoriatic disease prevention and early diagnosis	“What treatment can reduce the risk of developing PsA?”
19†	Understanding the relationship between hormones, infertility, and menopause and psoriatic disease, with a focus on women’s health	“What role do hormones (female in particular) play in disease progression? Flares? How do hormone fluctuations across a lifetime - puberty, child bearing and menopause - impact inflammation?”
19	Psoriatic disease diagnosis, management, and progression in pediatric patients	“Learning more about pediatric psoriasis progression”
18†	Improving access to dermatologic and rheumatologic care, underserved populations	“We’ve heard about how difficult if can be for rural patients to get access to a provider. Research on this would be interesting.”
17	Role of lifestyle factors (eg, nutrition, sleep, exercise, social connection, and stress)	“What are modifiable lifestyle factors patients should take action on, beyond weight loss?”
17†	Improving training and education about psoriatic disease for health care providers and patients	“Cognitive bias with dermatologist and how they view pain and differences within different age or gender groups”
17*	Increase understanding of the relationship between psoriatic disease and mental health	“How does psoriasis affect mental health, in particular with children and adolescents?”
12	Understanding the molecular basis of psoriasis (eg, genetics, microbiome, etc)	“More research on the mechanism of why psoriasis happens”
5	Advancing personalized medicine in psoriatic disease	“How can sequencing be used to better predict patient response to biologics?”
5	Factors affecting psoriatic disease progression	“Age of onset and disease progression”
3†	Role of alternative/ non-traditional treatments in management of psoriatic disease	“Benefits of cannabis for psoriatic arthritis”
0	Digital health and artificial intelligence in diagnosis and management	N/A
0	Role of environment (eg, air pollution, chemical exposures, global warming)	N/A

*Indicates that occurrences of research topics focused on mental health were counted separately from the “Psoriatic comorbidities” topic.

†Indicates topics not included on our original list of 10 research topics, but were frequent topics mentioned in the breakout session notes, attend written notes, and free response REDCap question.

Figure 1.

Word cloud from free response question (REDCap) and breakout session notes.

Discussion

Based on survey findings, the most patient-prioritized research areas were: improving psoriatic treatments, psoriatic comorbidities, and understanding the molecular basis of psoriasis. Respondents also provided examples of these research topics (Table 4). Psoriatic comorbidities was one of the highest prioritized topics, with suggested research ranging from exploring the connection between weight loss drugs and psoriasis improvement, the impact of psoriasis on sleep and mental health, and targeted psoriasis treatments based on individual patient’s comorbidities. Most respondents were female, which potentially contributed to the high interest in the relationship between hormones, infertility, and menopause and psoriatic disease. Mental health and the need for improved patient and provider training and education regarding psoriatic disease were also areas of high interest. Furthermore, more than 80% of attendees had higher than a high school level education, which may contribute to higher health literacy and therefore influence which research topics were of highest priority. One limitation of the study was the relatively low number of participants, which limits the generalizability of the findings to the broader population of patients with psoriasis.

Conclusion

Findings from our survey and session provide valuable insight into the topics most important to the psoriatic disease community and can help researchers design patient-centered research. This could ultimately increase study participation and retention, ultimately strengthening the patient-research alliance.