Patient Experiences with Psoriatic Disease in the USA: Results from the Psoriasis and Beyond Global Study

Abstract

Background

Psoriatic disease (PsD) is a chronic, multisystem, inflammatory disorder encompassing psoriasis, psoriatic arthritis (PsA), and their associated comorbidities.

Objective

The aim of this subanalysis of the global “Psoriasis and Beyond” study was to evaluate patients’ experiences of living with PsD in the USA.

Methods

The study included a cross-sectional, quantitative, 25-min online survey of adults with self-reported, healthcare professional-diagnosed, moderate-to-severe psoriasis, with or without PsA. USA-based patients were recruited through online panels by the Institut de Publique Sondage D’Opinion Secteur and The National Psoriasis Foundation.

Results

This analysis included 793 US patients with psoriasis; 43% also had PsA. Overall, 75% of patients knew that their disease was systemic, and 65% had heard the term “psoriatic disease.” Of patients without diagnosed PsA, 50% screened positive for PsA using the Psoriasis Epidemiology Screening Tool. Psoriasis negatively affected emotional well-being and quality of life (QoL) in the majority of patients (87% and 91%, respectively). Overall, 29% of patients reported that they could not work or study in the week prior to the survey; of these, 98% responded that psoriasis had a very or extremely large impact on their QoL. Mean diagnostic delays of 3.7 and 3.3 years for psoriasis and PsA, respectively, were reported.

Conclusions

This analysis of USA-based patients with PsD highlights the profound impact of PsD on emotional well-being and QoL and suggests potential underdiagnosis of PsA. There is a need to ensure early PsD diagnosis and to provide holistic treatment, including mental health support.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40801-025-00499-6.

Key Points

Educational gaps about the nature of psoriatic disease were identified in this study, particularly regarding the link between psoriasis and psoriatic arthritis.

Results of the Psoriasis Epidemiology Screening Tool indicate that psoriatic arthritis may be underdiagnosed in this US population of patients with psoriasis.

Psoriatic disease symptoms have a substantial impact on patients’ everyday lives, reducing their quality of life and ability to work.

Introduction

Psoriatic disease (PsD) is a chronic, multisystem, immune-mediated inflammatory disorder encompassing psoriasis, psoriatic arthritis (PsA), and their manifestations and comorbidities [1, 2]. PsD has a substantial impact on patients’ psychosocial well-being, quality of life (QoL), ability to work, and relationships and is associated with discrimination and stigma [3–7]. Psoriasis, of which plaque psoriasis is the most common form, is estimated to affect 3% of adults over 20 years of age in the USA (7.55 million individuals) [8]. Plaque psoriasis is characterized by erythematous, well-demarcated, red, purple, or brown skin plaques, often with silver scales [2, 9, 10], and is associated with numerous comorbidities including metabolic syndrome, cardiovascular disease, anxiety, and depression [2, 10–12]. PsA, characterized by swollen, stiff, and tender joints, is a common comorbidity of psoriasis; around 30% of patients with psoriasis will develop PsA, [13–15]. PsA is also often associated with extraarticular manifestations and comorbidities, including axial disease, dactylitis, enthesitis, nail disease, inflammatory bowel disease, and uveitis [16, 17].

Despite the availability of numerous therapeutic options for managing PsD, including biologics and targeted therapies, unmet medical needs remain [6, 18–22]. There are several key challenges in its management, including difficulties in diagnosis in individuals with skin of color, delayed referral or lack of access to specialist care (especially in rural communities), lack of education of healthcare professionals not routinely involved in PsD care (e.g., primary care physicians), comorbidity screening and management (including mental health), inconsistent long-term management pathways, and insurance coverage restrictions [6, 9, 18, 20, 23].

Psoriasis management guidelines emphasize the importance of educating patients on the link between psoriasis and PsA and highlight the need to manage comorbidities in addition to skin and joint manifestations [2]. Patients feel empowered when they have a broader understanding of their disease and greater control of their treatment options; therefore, assessing how much patients know about their disease and how it affects their everyday lives is important to improve care [5, 6, 24].

The aim of the global “Psoriasis and Beyond” study, which included 4978 patients with plaque psoriasis, with or without PsA, across 20 countries, was to assess patients’ understanding of the systemic nature of PsD and the emotional and symptomatic burden of living with the condition [25, 26]. The responses from the patients based in the USA are reported here.

Methods

Full details of the study design and methodology have been published previously [25, 26]. In brief, the study was a cross-sectional, quantitative online survey conducted in the USA between 12 November 2020 and 19 May 2021 and comprised a 5-min eligibility screener followed by a 25-min online questionnaire.

Participants

Patients were recruited through online panels (either self-registered to the panel or recruited by the agency maintaining the panel) by The Institut de Publique Sondage d’Opinion Secteur (Ipsos SA) and The National Psoriasis Foundation (NPF). Eligible participants were USA-based patients ≥ 18 years of age with self-reported, healthcare professional-diagnosed, moderate-to-severe plaque psoriasis when it was at its worst, with or without PsA. Individuals who had participated in a survey about PsD in the previous 4 weeks were excluded to prevent respondent bias and repetition of the survey.

Objectives

The primary objectives of this analysis were to assess patients’ understanding of psoriasis and PsA as part of a systemic condition and the physical and emotional burden of living with PsD in the USA. Key secondary objectives were to assess patients’ experiences with the healthcare system, including experiences with healthcare professionals, timely diagnosis, and management. Other objectives included assessment of sociodemographic characteristics, self-reported diagnosis, assessment of PsD comorbidities, and the financial impact of living with the disease.

Study Design, Data Sources, and Measurements

The study protocol and questionnaire were developed by Ipsos SA, Novartis, the International Federation of Psoriatic Disease Associations (IFPA), and a Steering Committee comprising patient organization representatives and medical experts (Electronic Supplementary Material [ESM]). The questionnaire incorporated several validated tools, including the Dermatology Life Quality Index (DLQI), a ten-item questionnaire assessing the effects of psoriasis on daily activities and level of disability [27], and the Psoriasis Epidemiology Screening Tool (PEST), a tool to help identify PsA at an early stage [28]. Additional questions from the “Clear about Psoriasis” survey [7] and other questions developed to meet the objectives of this study were included if deemed appropriate by the steering committee.

In the screening questionnaire, patients were asked to provide information about their psoriasis when it was at its worst historically. Psoriasis severity when at its worst was defined using a combination of patients’ self-reported body surface area (BSA, recorded on the basis of the response to the question “how much of the plaque psoriasis patches on your body could be covered by the palm of your hand?”) and the presence of psoriasis affecting sensitive and/or prominent body areas (face, palms, hands, fingers, genitals, soles of feet, or nails). Moderate psoriasis was defined as BSA ≥ 5% to < 10%, with psoriasis affecting sensitive and/or prominent body parts; severe psoriasis was defined as BSA ≥ 10%. Psoriasis severity at the time of the survey was assessed using patients’ self-reported BSA on the day of the survey (mild: BSA < 5%, moderate: BSA ≥ 5% to < 10%, and severe: BSA ≥ 10%). The steering committee defined the following body areas as “hard-to-treat”: face, genitals, nails, palms of hands, scalp, and soles of feet.

The impact of skin symptoms on QoL was estimated using previously reported DLQI ranges (DLQI: 0–1, no impact of the disease on QoL; 2–5, small impact; 6–10, moderate impact; 11–20, very large impact; 21–30, extremely large impact) [29]. Patients were asked to rate agreement with statements regarding healthcare professionals and PsD treatments on a scale from 1–5 (1, completely disagree; 3, neutral; and 5, completely agree) and to rate treatment satisfaction on a scale from 1–10 (1–4, unsatisfied; 5/6, uncertain; and 7–10, satisfied).

Statistical Analysis

A minimum sample size of 530 patients was estimated for the USA. All analyses were performed by Ipsos SA, and no predefined hypotheses were tested. Results were analyzed using IBM SPSS Statistic 24.0 software and reported descriptively; continuous variables were reported as mean, standard deviation, median, minimum, and maximum, while categorical variables were described in terms of frequency and percentage. Data were checked, validated, and tabulated using IBM SPSS Dimensions 2.2, a computer language designed for research data analysis. Any patients with missing values were removed from all relevant assessments (there was no imputation of missing data) but remained eligible for inclusion in other assessments.

Conduct and Ethics

Informed digital consent was obtained from patients before survey participation, and patients could withdraw at any time. Institutional review board approval was sought, for which an exemption was received that covered conducting the study in the USA. No personally identifiable information was collected in this study.

Results

Data Collection and Patient Demographics

A total of 14,785 patients were recruited in the USA, of whom, 3036 were eligible to complete the main questionnaire. Of these, 793 patients completed the 25-min questionnaire and were included in the analysis (595 [75%] recruited through Ipsos, 198 [25%] through the NPF).

The baseline characteristics of the 793 US respondents are shown in Table 1. A total of 52% were women (mean age 44.6 years), and 48% were men (mean age 42.8 years); 66% were married or in a domestic relationship, 79% had attended college or university, and 78% were currently employed. Of the 793 patients, 343 (43%) had also received a diagnosis of PsA.

Table 1.

Patient demographics and clinical characteristics

Parameter	Participants (N = 793)
Patient demographics
Gender, n (%)
Female	414 (52.2)
Male	377 (47.5)
Diverse	2 (0.3)
Mean age, years
Women	44.6
Men	42.8
Marital status, n (%)
Single	178 (22.4)
Married/domestic partnership	527 (66.5)
Separated	9 (1.1)
Divorced	62 (7.8)
Widowed	17 (2.1)
Level of education, n (%)
High school	163 (20.6)
College	355 (44.8)
University	273 (34.4)
Work status, n (%)
Employed	613 (77.3)
Unemployed	81 (10.2)
Retired	99 (12.5)
Clinical characteristics
Severity of psoriasis at its worst, n (%)
Moderate (BSA of ≥ 5 to < 10)	508 (64.1)
Severe (BSA of ≥ 10)	285 (35.9)
Patient knew BSA affecteda, n (%)
Yes	687 (86.6)
Did not remember	21 (2.6)
Never informed	85 (10.7)
Patients with PsAb, n (%)	343 (43.3)
Severity of PsAc, n (%)	N = 343
No active PsA	5 (1.5)
Low	38 (11.1)
Moderate	167 (48.7)
High	105 (30.6)
Not told	24 (7.0)
Do not know	4 (1.2)

^aWhen plaque psoriasis was at its worst

^bDiagnosed by a healthcare professional

^cBased on the last time a healthcare professional addressed PsA severity

Patient Awareness of Psoriasis and Psoriatic Arthritis as Part of a Systemic Disease

When asked about their awareness of psoriasis and PsA as part of a systemic disease, 75% of patients had heard that their disease was systemic (Fig. 1a), and 65% had heard the term “psoriatic disease” (Fig. 1b). The majority (patients without diagnosed PsA: 89%; patients with psoriasis and PsA: 92%) were aware of at least one manifestation (Fig. 1c), and 80% were aware of at least one related comorbidity (Fig. 1d). On average, patients were aware of 2.6 manifestations (Fig. 1c) and 3.0 comorbidities (Fig. 1d) related to PsD. Awareness of common manifestations was generally higher among patients with psoriasis and PsA than those without PsA (Fig. 1c). Less than 30% of all patients were aware that common comorbidities such as obesity, diabetes, and cardiovascular disease could be associated with PsD (Fig. 1d). Of the 756 patients who had heard about any manifestations or comorbidities that may be associated with PsD, the most common source of information was the patient’s healthcare professional (57%), with 49% learning from online platforms and 33% from friends or family (Supplementary Material Fig. S1).

Fig. 1.

Patients’ understanding of PsD. a Proportion of patients who had heard that psoriasis or PsA was part of a systemic disease. b Proportion of patients who had heard the term “psoriatic disease.” c Proportion of patients aware of manifestations that may be related to PsD. d Proportion of patients aware of comorbidities that may be related to PsD; N = 793. ^aIn patients without a diagnosis of PsA. GI gastrointestinal, PsA psoriatic arthritis, PsD psoriatic disease

Physical Impact of Psoriatic Disease

Patients were asked to self-report their affected BSA to determine the severity of psoriasis. At the time of the survey, 48% of all patients had mild psoriasis (BSA < 5%), 32% had moderate psoriasis (BSA ≥ 5% to < 10%), and 20% had severe psoriasis (BSA ≥ 10%; Fig. 2a). Only 7% of patients with mild psoriasis reported having no psoriasis signs or symptoms when surveyed; all patients with moderate or severe psoriasis reported experiencing psoriasis signs and symptoms, including red, raised inflamed skin plaques (71%), white/silver scales on red skin plaques (64%), and dry skin that may crack or bleed (63%; Fig. 2b). Patients reported that an average of 6.0 body areas and 2.1 hard-to-treat body areas (face, scalp, genitals, palms of the hands, soles of the feet, or nails) were affected by psoriasis at the time of the survey (Fig. 2c); psoriasis affected hard-to-treat body areas in a higher proportion of patients with severe psoriasis than moderate or mild psoriasis (Fig. 2d).

Fig. 2.

Manifestations of psoriasis at the time of the survey. a Severity of psoriasis at the time of the survey. b Proportion of patients experiencing psoriasis signs and symptoms by psoriasis severity at the time of the survey. c Proportion of patients with body parts currently affected by psoriasis. Orange dashed boxes denote hard-to-treat body areas. d Proportion of patients with sensitive body areas affected by psoriasis severity at the time of the survey; N = 793

On average, patients reported having 2.7 comorbidities (selected from a predefined list); the comorbidity burden was highest among those with severe psoriasis (2.7, 2.4, and 3.2 comorbidities for patients with mild, moderate, and severe psoriasis, respectively; Fig. 3a). Anxiety and depression were the most common comorbidities, followed by raised cholesterol, obesity/overweight, chronic gastrointestinal diseases, inflammatory arthritis or chronic joint inflammation, cardiovascular disease, and diabetes (Fig. 3b).

Fig. 3.

Comorbidities experienced by patients with PsD. a Average number of comorbidities experienced by patients. b Proportion of patients with diagnosed comorbidities by psoriasis severity at the time of the survey; N = 793. ^aIncluding irritable bowel syndrome, indigestion, ulcerative colitis, Crohn’s disease, heartburn, and gastritis. ^bIncluding cardiac/heart failure, arrhythmia, cardiomyopathy, coronary artery disease, and hypertension. ^cIncluding ankylosing spondylitis and nonradiographic axial spondyloarthritis. GI gastrointestinal

Of the patients with diagnosed PsA (n = 343), 49% had moderate PsA severity, 31% had high severity, 11% had low activity, and 1% had no PsA activity, on the basis of what their healthcare professional had told them the last time their disease severity was assessed; 7% had not been told their disease activity level by their healthcare team, and 1% did not know their activity level (Table 1). A higher proportion of patients with severe psoriasis experienced PsA symptoms than those with moderate or mild psoriasis (Fig. 4).

Fig. 4.

Proportion of patients with PsA experiencing PsA signs and symptoms by psoriasis severity at the time of the survey. N = 343. PsA psoriatic arthritis

Of patients not previously diagnosed with PsA (n = 450), 50% screened positive for PsA using the PEST (Supplementary Material Fig. S2a). Symptoms reported in the year prior to the survey included at least one swollen joint (63%), a painful/swollen finger or toe (48%), heel pain (45%), being told by a doctor that they had arthritis (44%), and holes or pits in their fingernails or toenails (35%; Supplementary Material Fig. S2a). Notably, of psoriasis-only patients with joint symptoms (n = 316), 74% had asked their healthcare professional about these (Supplementary Material Fig. S2b). The psoriasis characteristics of patients without a PsA diagnosis and their awareness of manifestations related to PsD are shown by PEST screening (positive or negative) in Supplementary Material Fig. S3a and S3b.

Insights into the Impact of Psoriatic Disease on Work, Daily Activities, Quality of Life, and Emotional Well-being

When asked how much their skin symptoms had affected their life over the last week (according to the DLQI), 91% of patients expressed that it had affected their QoL, with a very or extremely large impact reported by over 50% of patients, regardless of disease severity (extremely large effect, 25%; very large effect, 28%; moderate effect, 20%; small effect, 19%; and no effect, 9%) (Fig. 5a). Similarly, the impact on QoL was greater with a higher number of hard-to-treat body areas that were affected by psoriasis (Fig. 5b). In general, a high proportion of patients with hard-to-treat body areas affected reported that PsD had a very or extremely large impact on their QoL (Supplementary Material Fig. S4).

Fig. 5.

Impact of PsD on QoL using DLQI. a Effect of skin symptoms on QoL in the week prior to the survey by psoriasis severity at the time of the survey. b Effect of skin symptoms on QoL in the week prior to the survey by the number of hard-to-treat body areas affected. N = 793. DLQI Dermatology Life Quality Index, PsD psoriatic disease, QoL quality of life

When asked about the impact of their skin symptoms on their ability to work or study, 29% of patients said they had been prevented from working or studying in the week prior to the survey (Fig. 6a); 12% reported that their choice of career was affected by PsD, 11% had difficulty getting a job because of their PsD, and 10% had experienced discrimination at work (Supplementary Material Fig. S5a). Almost half (46%) of patients with severe psoriasis said they were prevented from working or studying in the week prior to the survey because of their skin symptoms (Fig. 6a). For those patients who were able to work or study (n = 436), around half (48%) stated their work or study was impacted by skin symptoms, irrespective of psoriasis severity (Fig. 6c). Of the patients who were unable to work or study in the week prior to the survey, almost all (98%) reported that their skin symptoms had a very or extremely large impact on their QoL (Fig. 6d). Of those who were able to work, 69% of those who said their work was impacted a lot by their skin symptoms also reported that their skin symptoms had a very or extremely large impact on their QoL (Fig. 6e).

Fig. 6.

Impact of disease on patients’ experiences of work or study. a Proportion of patients prevented from working or studying owing to skin symptoms in the week prior to the survey by psoriasis severity. N = 793. b Impact of skin symptoms on work or study for those able to work or study during the week prior to the survey by psoriasis severity. N = 436. c Proportion of patients prevented from working or studying owing to skin symptoms in the week prior to the survey by quality of life. N = 793. d Impact of skin symptoms on work for those able to work during the week prior to the survey, by QoL. N = 436. QoL quality of life

The majority of patients reported that their PsD affected their mental health, with 87% stating that PsD had a negative impact on their emotional well-being. Patients stated that their skin symptoms made them feel unattractive (42%), less confident about themselves (37%), ashamed of their skin (35%), depressed (33%), or ashamed of their body (30%; Supplementary Material Fig. S5b). In terms of relationships, although 32% of patients reported that their partner loved them just the way they were, 21% said that they avoided having sex because of their condition or could not stand the thought of someone touching or seeing their skin (Supplementary Material Fig. S5c). Patients also felt that PsD prevented them from doing activities they would otherwise love to do; 38% said they could not do sports or physical activities, and 38% said they avoided wearing clothes that exposed their skin (Supplementary Material Fig. S5d). Many patients also noted that they had experienced stigma and discrimination, such as people not understanding the impact the disease had on the patient’s life (36%), being asked if they were contagious (36%), and being stared at in public (34%) (Supplementary Material Fig. S5a). When patients were asked if they used any strategies to cope with their disease, talking to friends and family/friends (33%) and exercise/sport (25%) were the most commonly cited methods (Supplementary Material Fig. S6).

Patient Journey, Patient–Healthcare Professional Relationship, and Treatment Perceptions

The mean age at which patients first identified signs or symptoms of psoriasis was 23.4 years. In comparison, mean age at diagnosis was 27.1 years, representing a mean delay in diagnosis of 3.7 years (Fig. 7). For PsA, the respective ages were 30.3 years for onset of symptoms and 33.5 years for diagnosis, equating to a mean diagnostic delay of 3.3 years (Fig. 7).

Fig. 7.

Time between the first manifestation of psoriasis or PsA and diagnosis. PsA psoriatic arthritis

Dermatologists were predominantly cited as the healthcare professionals who confirmed patients’ psoriasis diagnoses (66%) and provided treatment (55%). Rheumatologists most commonly confirmed PsA diagnoses (54%) and provided treatment (55%) for PsA (Supplementary Material Fig. S7).

When asked about discussions with their healthcare professional, 43% of patients stated that they had actively asked their healthcare professional about the link between psoriasis and PsA, and 37% said their healthcare professional had actively addressed this topic (Supplementary Material Fig. S8a). Of the patients with psoriasis-only (n = 450), 66% said that their healthcare professional asked if they had experienced PsA symptoms (Supplementary Material Fig. S8b), and 62% had been advised to self-screen their joints for PsA symptoms such as joint pain, heel pain, or stiffness (Supplementary Material Fig. S9a). Of these patients, over half (61%) reported they self-screened for PsA several times a month (20% once a month, 7% once every 3 months, 2% once every 6 months, 1% once a year, and 1% less than once a year), and 8% reported that they never self-screened for PsA (Supplementary Material Fig. S9b).

When asked to rate their agreement with statements regarding healthcare professionals in general, patients appeared to have confidence in their healthcare professionals, with 82% stating that they always followed their healthcare professionals’ advice (Supplementary Material Fig. S10). Just over half (51%) of all patients noted that they were involved in deciding their treatment goals; 11% of patients had not discussed their treatment goals with their healthcare professional, and for the remaining patients (37%), their healthcare professional decided on treatment goals without the patient’s input. Among those who stated that their healthcare professional decided on treatment goals with or without their input (n = 702), the most common goals were reducing skin symptoms (52%), improving QoL (48%), and achieving and maintaining clear or almost-clear skin (45%; Supplementary Material Fig. S11a). Patients’ personal treatment goals (independent to those agreed with their healthcare professional) are shown in Supplementary Material Fig. S11b.

The most commonly used psoriasis therapies at the time of the survey were topical treatments (73%) and/or biologics (56%); a mean of 4.1 topical treatments and 2.7 biologics were received by patients over the course of their disease (Supplementary Material Fig. S12a and b). Biologics (60%) and nonsteroidal antiinflammatory drugs (NSAIDs; 58%) were the most commonly used treatments for PsA; on average, patients had received a total of 3.1 and 3.6 biologics and NSAIDs, respectively (Supplementary Material Fig. S12c and d). Despite being recommended by their healthcare professional, biologic treatments had been refused by 35% of all patients, with possible side effects (45%), possible long-term effects (38%), and personal costs (37%) cited as the most common reasons for refusal (Supplementary Material Fig. S13a and b). When asked to rate their satisfaction with their current treatment, 66% of patients with psoriasis were satisfied with their treatment, 19% were uncertain, and 15% were unsatisfied. Among the patients with PsA, 62% were satisfied with their treatment, 20% were uncertain, and 18% were unsatisfied. The main reasons for treatment dissatisfaction were lack of improvement in QoL and lack of symptom relief (Fig. 8).

Fig. 8.

Reasons for dissatisfaction with treatment. All patients dissatisfied with psoriasis (n = 114) or PsA (n = 60) treatment. ^aOnly shown to patients with PsA. ^bToo expensive or not covered by medical system. PsA psoriatic arthritis, QoL quality of life

Patients were asked how much of their own money they spent on their condition (Fig. 9a). Overall, the highest out-of-pocket costs (mean $240 per month) related to healthcare, prescriptions, doctors’ fees, alternative practitioners, dietitians, and complementary medicine, with nonprescription medicines, creams, and lotions being the next highest cost (mean $147 per month). Patients with severe psoriasis had higher out-of-pocket costs for physiotherapy, medical-related travel, and nonprescription medicines, creams, and lotions than those with moderate or mild psoriasis (Fig. 9a). Patients with hard-to-treat body areas affected by psoriasis spent a substantial amount of their own money per month, particularly those with affected soles of the feet, palms of the hands, face, or nails (Fig. 9b).

Fig. 9.

Mean monthly out-of-pocket costs for PsD (USD). a Monthly out-of-pocket costs for PsD by psoriasis severity at the time of the survey. b Monthly total out-of-pocket costs for PsD by hard-to-treat body areas affected. N = 793. PsD psoriatic disease

Discussion

This subanalysis of the global “Psoriasis and Beyond” study explored patients’ understanding of and experiences living with PsD in the USA. Disease awareness in this US population was relatively high compared with the overall global population (65% had heard the term “psoriatic disease,” and 75% were aware that it was a systemic condition versus 60% and 69% in the overall global population, respectively ) [26]. Patients had a high symptomatic burden of psoriasis, demonstrated by the prevalence of symptoms affecting hard-to-treat body areas; almost two-thirds of psoriasis-only patients had experienced joint pain, a greater proportion than the 52% reported for the US cohort of the Multinational Assessment of Psoriasis and Psoriatic Arthritis (MAPP) survey (N = 1005) [18].

PsA affects approximately 30% of patients with psoriasis [13, 14]. Here, the proportion of patients with PsA was slightly higher than the global population (43% versus 30%), and 50% of patients without PsA screened positive for PsA signs and symptoms using the PEST questionnaire (38% in the global study population) [26]. While the PEST questionnaire is a screening tool and not a diagnostic test, these results demonstrate the substantial symptomatic burden of psoriasis in this USA-based population, including symptoms usually associated with PsA.

Importantly, while around two-thirds of patients reported that their healthcare professional had asked them if they had experienced joint symptoms, only 37% noted that their healthcare professional had actively discussed the link between psoriasis and PsA. Given the role that healthcare professionals play in providing patients with information about their condition, this suggests a gap in education and communication between patients and their healthcare professionals.

Early diagnosis is crucial for improving PsA outcomes [30, 31]; permanent structural damage, functional disability, and a reduced likelihood of remission have been associated with a diagnostic delay greater than 6 months [32]. In the global MAPP survey population, the mean diagnostic delay for psoriasis and PsA were 2 years and 5 years, respectively [20]. In the US analysis of MAPP, a quarter of rheumatologists cited delayed referral as one of their greatest challenges [18]. In our study, a longer diagnostic delay for psoriasis (mean 3.7 years) was reported compared with 2.6 years in the global study population, suggesting diagnostic pathways could be improved in the USA. The average time to diagnosis of PsA in this survey of US patients was 3.3 years, and while this is shorter than in the MAPP survey [20], it is 1.3 years longer than was reported for the global study population [26]. These findings further underscore the need for proactive screening for PsA by healthcare professionals and improved patient education about the links between psoriasis and PsA.

The emotional and QoL burden of PsD is well established [3, 5, 6, 18, 20]. Here, most patients expressed that PsD negatively impacted their emotional well-being (86%) and QoL (91%). Over half of all patients reported that their disease had a “very” or “extremely large” impact on their QoL, including 38% of patients with mild psoriasis when surveyed. This highlights the burden of the disease, even for those categorized as having “mild” disease by BSA coverage. The most commonly reported comorbidities were anxiety and depression, affecting around one-third of patients. Patients coped with the burden of their disease using strategies including talking to friends/family, sports, and social media; these coping strategies could be useful for patient organizations to target support for patients through their journey with PsD.

Psoriasis has a high economic burden on patients, healthcare systems, and society [3, 33, 34]. In the USA, indirect work-loss–related costs are 1.5 to 3 times higher in patients with psoriasis than in the general population, dependent on the number of comorbidities a patient has [33]. The mean annual indirect cost due to work productivity loss per patient in the USA has been estimated at $9591 [35]. On average, patients reported spending over $240 per month of their own money on prescriptions and other medical costs and $147 on nonprescription medicines. Costs related to lack of productivity were not reported in this analysis; however, in the week prior to the survey, 29% of patients reported that PsD had prevented them from working or studying, and of those who were able to work or study, half of patients reported that skin symptoms impacted their work. QoL is an independent predictor of work productivity in people with psoriasis [36]; in our study, almost all patients who could not work (98%) also reported that psoriasis had a very or extremely large effect on their QoL. Interventions that improve patients’ QoL would likely increase work productivity and thereby reduce the economic burden of PsD for both patients and healthcare systems [36]. Further investigation is warranted to quantify the actual cost of loss of productivity for patients with psoriasis in the USA.

We report a slightly higher level of trust in healthcare professionals by US patients with PsD compared with the global study population (82% versus 75% stated they would always follow their healthcare professionals’ advice). More US patients were involved in deciding their treatment goals versus the global population (51% versus 41%) [26], representing a higher rate of shared decision-making than previously reported in a US cohort of patients with psoriasis (42%) [37]. The relatively high rates of shared decision-making in our study may reflect the level of trust patients have in their healthcare professional(s) or may be influenced by how the patients were recruited. Patients who are involved in patient advocacy groups (PAGs) may be more empowered and engaged with their condition than those who are not, and 25% of our population were recruited via a PAG versus 19% in the overall global population [26]. In terms of treatment goals, improving QoL was reported almost as frequently as symptom reduction as one of the main goals set by healthcare professionals and patients. When patients were dissatisfied with treatment, the main reasons were lack of improvement in QoL and incomplete symptom relief, highlighting the importance of holistic care that goes beyond the skin.

In this analysis, the use of biologics for both psoriasis (56%) and PsA (60%) was higher than in the global survey population (42% and 55%, respectively) [26]. Biologic use in US patients with PsD has increased since 2001, with their rate of use more than double that of oral systemic or phototherapy combined [38]. Despite this, a higher proportion of patients in our study had refused a biologic compared with the overall global survey population (35% versus 29%). This indicates that additional research is required to further understand the reasons for hesitancy around biologics in the USA and that educational initiatives may be required.

The strengths of this analysis include the wide reach and the use of a visual aid tool in the study to facilitate accurate self-assessment of disease severity [26]. There were several limitations consistent with a survey based on patients’ perspectives. These include inaccurate information recall, misinterpretation of questions, and varying understanding of the disease. In addition, this subgroup analysis was not powered for statistical comparisons; therefore, all results were reported descriptively. The study population that ultimately completed the survey may not mirror the disease population; for example, patients without access to the internet or who were not engaging with a PAG may have been less likely to participate. Furthermore, patients involved with a PAG may be more knowledgeable about their disease than the general disease population. Similarly, it is difficult to predict whether the disease severity of our population is reflective of the general population; patients with more burdensome disease may be more motivated to complete a survey, or conversely, those with less severe disease may have had more capacity to do so.

Conclusions

The results from this USA-based, cross-sectional analysis demonstrate that patients with PsD have insufficient awareness of common PsD manifestations and systemic comorbidities, highlighting an unmet educational need. Even mild PsD has a considerable impact on patients’ QoL and daily activities, which will likely result in a substantial economic burden for patients and wider society. Half of US patients from Psoriasis and Beyond without a PsA diagnosis screened positive for PsA symptoms on the PEST questionnaire, suggesting that PsA may be underdiagnosed in the USA. While healthcare professionals commonly ask patients with psoriasis about their joint symptoms, they may not be actively screening using validated tools such as the PEST questionnaire, which indicates additional educational needs for healthcare professionals. These tools could lead to an earlier PsA diagnosis and improved patient outcomes. Patients with psoriasis face a complex journey through healthcare systems in the USA, and delayed diagnoses and dissatisfaction with treatment are relatively common. To manage this long-term systemic disease effectively and improve patients’ QoL, a holistic approach to PsD management beyond controlling skin and joint symptoms should be adopted.

Supplementary Information

Below is the link to the electronic supplementary material.

Abbreviations

BSA

Body surface area

DLQI

Dermatology Life Quality Index

GI

Gastrointestinal

Ipsos SA

Institut de Publique Sondage d’Opinion Secteur

MAPP

Multinational Assessment of Psoriasis and Psoriatic Arthritis

NPF

The National Psoriasis Foundation

PAG

Patient advocacy group

PEST

Psoriasis Epidemiology Screening Tool

PsA

Psoriatic arthritis

PsD

Psoriatic disease

QoL

Quality of life

Declarations

Funding

The study, medical writing support, and open access fee for this manuscript were funded by Novartis AG.

Conflicts of Interest

A.W.A. has served as a research investigator, scientific advisor, and/or speaker at AbbVie, Almirall, Arcutis, ASLAN, Beiersdorf, BI, BMS, EPI, Incyte, LEO Pharma, UCB, Janssen, Lilly, Mindera, Nimbus, Novartis, Ortho Dermatologics, Sun, Dermavant, Dermira, Sanofi, Regeneron, and Pfizer. S.M. receives no individual compensation and is employed by IFPA. In the past 12 months, IFPA has accepted grants and funding from AbbVie, Almirall, Amgen, Bristol Myers Squibb, Boehringer Ingelheim, Janssen, Leo Pharma, Eli Lilly, Novartis, Pfizer, and UCB. G.C.G. is an employee of The National Psoriasis Foundation. E.K. was a full-time employee of Novartis Pharma AG, Basel, Switzerland. S.F. is a full-time employee of Novartis Pharma AG, Basel, Switzerland. A.O. serves as a consultant of AbbVie, Amgen, BMS, Celgene, CorEvitas, Eli Lilly, GSK, Gilead, Janssen, Merck, Novartis, Pfizer, Spyre Therapeutics, Takeda, Treg Therapeutics, and UCB Pharma and has received grants and/or research support from AbbVie, Amgen, BMS, Janssen, Novartis, Pfizer, UCB, Forward/National Databank for Rheumatic Diseases, NIH/NIAMS, PPACMAN, Rheumatology Research Foundation, and The National Psoriasis Foundation.

Availability of Data and Materials

Results analyzed during this study are included in this published article and its supplementary information files; additional data may be available upon request from Novartis on a case-by-case basis.

Ethics Approval

An institutional review board (Pearl IRB) considered this study to be exempt from ethics approval according to FDA 21 CFR 56.104 and 45CFR46.104(b)(2):(2).

Consent to Participate

Informed digital consent was obtained from patients before study participation. The procedure for obtaining electronic informed consent was outlined in the Psoriasis and Beyond study protocol, which was reviewed and approved according to local laws and regulations.

Consent for Publication

Not applicable.

Code Availability

Not applicable.

Author Contributions

A.W.A., A.O., S.F., and S.M.: study conception and design, data interpretation, and writing/revision of the manuscript. E.K. and G.C.G.: data interpretation and writing/revision of the manuscript. All authors reviewed and approved the final version of the manuscript for submission.