Perceptions and Experiences of Patients Across All Skin Tones Living with Psoriasis in Canada

Abstract

Introduction

Psoriasis is a chronic inflammatory skin disease that significantly impacts patients’ quality of life. Patients with skin of colour (SoC) often face unique barriers related to gaining access to care, diagnosis and treatment, which can contribute to health disparities. The aim of this study was to assess patient-reported experiences across the psoriasis care continuum in Canada, comparing white and non-white populations.

Methods

A 15-min online survey was administered between 9 December and 19 December 2022 to patients ≥ 18 years with a confirmed psoriasis diagnosis. The survey included 33 questions covering demographics, medical history, psoriasis experience and access to information. Responses were analysed using t-tests at a 90% confidence level to identify significant differences based on ethnicity, treatment users, gender, psoriasis severity and region.

Results

Of approximately 2500 invited participants, 103 met the eligibility criteria: 62 self-identified as white and 41 as non-white. A higher proportion of non-white patients reported severe psoriasis, delays in diagnosis and greater emotional and social burden during the pre-diagnosis stage. Non-white patients were more frequently diagnosed and treated by dermatologists and more commonly used non-topical therapies. Misdiagnosis, often as eczema or dermatitis, was more prevalent among non-white patients. Treatment initiation was more commonly delayed in non-white patients, with 71% reporting difficulty accessing effective therapy, compared to 31% of white patients. A greater proportion of non-white respondents sought additional support and education, especially for mental wellness and advocacy resources.

Conclusion

Disparities in psoriasis care are evident across the experience of patients with psoriasis. Among those who participated in the survey, a greater proportion of the non-white patients faced delayed diagnosis, misdiagnosis, and greater barriers to treatment access, often reflecting more severe disease and unmet informational needs. These findings highlight the importance of culturally competent care and inclusive research to ensure equitable outcomes for all patients with psoriasis. Enhanced representation in clinical trials and targeted health interventions are essential to address these disparities.

Key Summary Points

Why carry out this study?

Patients with psoriasis across skin tones can present differently and experience different care journeys, yet research on these differences in Canada is limited.

This study, based on a national patient survey, aimed to explore disparities in the psoriasis care experience between white and non-white patients.

What was learned from this study?

Non-white patients reported more frequent misdiagnosis, delays in care and greater emotional and social burden.

Non-white patients also faced more barriers gaining access to effective treatment and expressed a stronger need for mental health and advocacy support.

These findings highlight the need for culturally competent care and more inclusive psoriasis research.

Introduction

Psoriasis is a chronic, immune-mediated inflammatory disease with both cutaneous and systemic manifestations, affecting an estimated 2–3% of the global population [1–3]. It significantly impacts quality of life, as highlighted in the World Health Organization (WHO) Global Report on Psoriasis, which cites misdiagnosis, limited treatment access and stigma as major challenges for patients [2, 4]. Health disparities are especially evident in dermatology, where skin of colour (SoC) may influence the presentation, diagnosis and management of conditions like psoriasis [5].

In Canada, patients must obtain a referral from a general practitioner (GP) to gain access to a dermatologist, as self-referral is not permitted, which may contribute to delays in diagnosis. In 2022, Yadav et al. [5] highlighted that patients with SoC in Canada and the USA face unique barriers throughout the care journey, including limited access to culturally competent care. Building on these findings, we conducted a Canadian survey in late 2022 to explore the diagnosis and treatment experiences of patients with psoriasis, focusing on ethnic differences (white vs non-white) across the pre-diagnosis, diagnosis and treatment stages. The objectives of this survey, which forms the basis of the current report, were to understand patient perceptions, assess disparities across ethnic groups and evaluate the availability and quality of support resources.

In this report we summarize the findings from the “Psoriasis Culturally Inclusive Patient Research” initiative, highlighting how SoC may influence the experience of patients with psoriasis and identifying alignment with previously published data.

Methods

Between 9 December and 19 December 2022, approximately 2500 Canadian patients with psoriasis were invited to participate in a 15-min online, quantitative survey available in both English and French. The patient sample was identified through referrals, social media advertisements and sourcing from patient advocacy groups. Participants created a profile in which they were asked to identify their condition and answer a series of associated questions to confirm that they had been diagnosed with psoriasis by a medical professional. Those who passed the profile screening joined the panel as patients with psoriasis, received the survey request through their patient portal and were sent reminders encouraging their participation. The survey was designed to capture patients’ experiences in psoriasis management across their journey from pre-diagnosis, to diagnosis and treatment, followed by their ability to gain access to resources and information. Participant responses were deemed eligible for analysis if the entirety of the survey was completed in the allotted time and if they met the following inclusion criteria: at least 18 years of age; self-identified at least one ethnicity; diagnosed with psoriasis by a healthcare provider; and currently receiving at least one treatment for psoriasis.

The survey included 33 questions across four sections: (1) “Screener” (8 questions), covering demographics, psoriasis diagnosis, severity and treatment history; (2) “Psoriasis Experience” (17 questions), addressing diagnosis, misdiagnosis, treatment access and healthcare provider interactions; (3) “Information Sources/Messaging” (4 questions), on support, resources and preferred information channels; and (4) “Classification” (4 questions), covering insurance, self-assessed skin tone, education and income. Question types included multiple-choice (single and multiple response), Likert-scale ratings, numerical entry and open-ended responses. Some questions incorporated branching logic or an “Other” option for additional detail, ensuring a comprehensive assessment of patients’ experiences.

To analyze the survey responses, statistical t-testing was performed and applied at the 90% confidence level. Significant differences between groups were reported as percentages. The analysis compared several patient groups and subcategories: ethnicity (white and non-white); treatment type (biologic and non-biologic users); gender (male and female); psoriasis severity (mild, moderate, severe); region (West, Ontario and Quebec—with Quebec results interpreted with consideration of the small base size and the Atlantic region being excluded due to extremely small base size); and skin tone in the non-white ethnic group (non-white lighter skin tone and non-white darker skin tone). Patients were categorized as ‘white’ if they selected only white ethnicity, and as ‘non-white’ if they selected any other ethnicity. Participants who selected white in combination with one or more additional ethnic groups were categorized as ‘non-white’. For dichotomous or categorical data, proportion t-testing with two-tails was used by the Quantum Tabulation tool (version 6 was used for table generation). The proportion t-test looks at data from each row of a table independently and compares data in pairs of columns to test whether the proportion of respondents in one column is significantly different from the proportion in the other; this approach allows for efficient use of confidence levels.

Ethics committee, institutional review board (IRB) or research ethics board (REB) approval was not required for this study as it was conducted as an online quantitative market research survey and did not involve interventions with human subjects. Accordingly, no ethics committee name(s), reference number(s) or IRB approval number are available. The study was conducted in accordance with applicable legal requirements and industry standards for market research. All participants provided informed consent to participate prior to inclusion in the study. All responses were fully anonymized, and no identifiable personal information was collected; therefore, consent to publish identifiable information was not applicable.

Results

Of the approximately 2500 patients with psoriasis initially screened for participation in the survey, 103 patients were determined to be eligible for inclusion in the statistical analysis based on their responses. Of these, 62 patients self-identified as white, while 41 self-identified as non-white (Black, East Asian, Indigenous, South Asian, Middle Eastern, Hispanic, Southeast Asian and Other). Most participants were not using a biologic (81), with only 22 indicating current use of biologic therapy. The sample accurately reflects the age, gender and regional distribution (West 32%, Ontario 46%, Quebec 18%, Atlantic 4%) observed in the Canadian general population [6].

The Pre-Diagnosis Experience

The pre-diagnosis stage defines the period prior to the initial healthcare provider visit at which a patient experienced disease flares that increase in severity over time, leading to the realization that intervention was required; this stage could have lasted for months to years in duration. When untreated, most patients experienced psoriasis of mild (38%) or moderate (41%) severity, with up to 10% of their body surface area (BSA) affected. However, non-white patients and those who eventually used biologics tended to have more severe disease before diagnosis, with more than 10% of BSA affected. Patients reported feeling self-conscious of the appearance of their skin and strongly agreed that they lacked knowledge of available treatment options for psoriasis at this stage. Non-white patients were more likely to agree with statements that described the negative aspects of psoriasis signs and symptoms including self-consciousness, social stigma and differential treatment by their healthcare providers due to the colour of their skin. Non-white patients expressed opinions that were significantly different than those of white patients relating to statements about experiences with psoriasis during the pre-diagnosis period. Among all respondents, 76% reported having used over-the-counter products as their first approach to managing signs and symptoms. On average, patients used approximately five topical treatments throughout their journey, and one third found these to be effective. Non-white patients were more likely to have purchased over-the counter products, used more topical treatments and reported higher levels of effectiveness (extremely or very effective) with topical treatments compared with white patients.

Regarding timing of their first healthcare provider visit for psoriasis, 65% of patients waited 0–5 months after onset of signs and symptoms to see either a general practitioner (GP) or a dermatologist. White patients more commonly first visited a GP, while non-white patients were more likely to first visit a dermatologist.

The Diagnosis Experience

Similar to the pre-diagnosis stage, the diagnosis stage can represent a very different experience for different patients and, therefore, could span anywhere from 3 months to several years. The most significant triggers that drove patients to seek a diagnosis were feeling self-conscious about their skin’s appearance (49%) and experiencing bothersome symptoms (47%). A greater proportion of non-white patients indicated that self-consciousness impacted daily life and that the development of new symptoms triggered their wanting to establish a formal diagnosis. A diagnosis of psoriasis was most commonly provided by a dermatologist (52%), followed by a GP (42%). In line with findings regarding the first healthcare provider visit, non-white patients were more likely to be diagnosed by a dermatologist, while white patients were more likely to be diagnosed by a GP. Dermatologists primarily diagnosed the more severe cases of psoriasis while GPs diagnosed the mild and moderate cases.

Most patients received a diagnosis within 6 months after onset of symptoms. Notably, a significantly greater proportion of white patients received a diagnosis within 3 months. In contrast, a significantly higher proportion of non-white patients waited 3 to 5 years for receiving a diagnosis of psoriasis (Fig. 1). Differences in timing between the appearance of disease manifestations and establishing a diagnosis may relate to a variety of challenges faced by patients following the onset of signs and symptoms. The most common challenges identified by patients were believing that their psoriasis was not severe enough to warrant care (35%) and long wait times for a specialist appointment with a skin care specialist (32%). Overall, 90% of non-white patients reported facing challenges in getting a diagnosis, while 66% of white patients indicated having similar issues. In addition, 27% of patients reported delays in receiving a diagnosis of psoriasis due to initial misdiagnosis of their disease. Psoriasis was most commonly misdiagnosed as eczema, followed by seborrheic dermatitis and irritant or allergic contact dermatitis. Misdiagnosis was more common among non-white patients and those with mild psoriasis.

Fig. 1.

Time between the appearance of signs and symptoms and receiving a diagnosis of psoriasis. Results were based on the survey question: “What was the length of time between the appearance of your symptoms and receiving a diagnosis for psoriasis? Select one option”. Base included all respondents (n = 103). Base size: male (n = 51), female (n = 52); West (n = 33), Ontario (n = 47), Quebec (n = 19*); mild (n = 39), moderate (n = 42), severe (n = 22*). Less than 3 months: Ontario (32%) > Quebec (11%). 6–12 months: male (31%) > female (8%); Quebec (32%) > Ontario (13%). 1–2 years: moderate (21%) > severe (5%). 3–4 years: severe (14%) > moderate (0%); West (6%), Quebec (11%) > Ontario (0%). 4–5 years: female (6%) > male (0%). More than 5 years: severe (9%) > moderate (0%). Asterisk (*) beside a value indicates small base size, limiting interpretation. *small base size limits interpretation

The Treatment Experience

Psoriasis treatment involves the use of various therapies, including topical treatments, phototherapy and systemic agents such as biologic and non-biologic medications. Since psoriasis is a chronic disease, ongoing maintenance therapy over several years is typically required. Of the available therapies, topical treatments (both prescription and non-prescription) were the most commonly used, reported by 84% and 80% of patients, respectively. Prescription oral systemic and immunosuppressive drugs, injectable biologics and phototherapy, were all more frequently used by non-white patients. More than half of the patients indicated they were being treated by their dermatologist, although a higher proportion of non-white patients reported being treated by a dermatologist, while a higher proportion of white patients reported being treated by a GP. About half of the overall patient cohort began treatment immediately after receiving a diagnosis of psoriasis; however, white patients were more likely to initiate treatment upon diagnosis. A greater percentage of non-white patients (34%) than white patients (12%) initiated treatment between 3 and 5 months after receiving a diagnosis of psoriasis. Regarding challenges faced during treatment, 47% of patients expressed difficulties in gaining access to an effective psoriasis treatment; 71% of non-white patients and 31% of white patients, most of whom had moderate or severe psoriasis, reported facing such challenges (Fig. 2). The main challenges with obtaining a psoriasis treatment included finding a treatment that worked well (69%) and affordability (54%). To assess the effectiveness of their treatment, patients measured the BSA covered with psoriasis using the palm of their hand (one palm equaling 1% of body area) and reported only a slight improvement in BSA with psoriasis after starting their current treatment (mean of 18% improving to a mean of 13%).

Fig. 2.

a Proportions of patients who faced challenges finding an effective psoriasis treatment. Results were based on the following survey question: “Did you have any challenges getting onto an effective treatment? Select one option”. Base included all respondents (n = 103). Base size: white (n = 62), non-white (n = 41); biologic user (n = 22*), non-biologic user (n = 81); mild (n = 39), moderate (n = 42), severe (n = 22*). Patients who answered “Yes”: non-white (71%) > white (31%); biologic (64%) > non-biologic (42%); moderate (52%), severe (73%) > mild (26%). Patients who answered “No”: white (69%) > non-white (29%); non-biologic (58%) > biologic (36%); mild (74%) > moderate (48%), severe (27%). b Challenges of getting psoriasis treatment. Results were based on the following survey question: “What were some of the challenges of getting treatment for your psoriasis? Select all that apply”. Base: patients who faced challenges getting onto an effective treatment (n = 48). Asterisk (*) beside a value indicates small base size, limiting interpretation

A variety of resources were consulted by patients to enhance their knowledge of psoriasis treatments. Healthcare providers were the main resource used by all patients. Non-white patients also tended to use other resources, such as medical journals and information pamphlets. Most patients felt they had sufficient support and resources to manage their psoriasis. However, they still felt that access to more treatments and more information on both new treatments and overall psoriasis management would have been helpful for their care, especially in the form of online resources. White patients were more likely than non-white patients to feel that they had sufficient information and resources to manage their psoriasis. In contrast, non-white patients were more likely to express a desire for greater access to psoriasis and mental wellness information as well as to advocacy and local support groups.

Discussion

This survey study captured firsthand experiences of patients living with psoriasis in Canada, examining access to healthcare providers, time to care after disease onset, signs and symptoms driving patients to seek a diagnosis, diagnostic challenges, most commonly used treatments and access to information and healthcare resources. Differences across these parameters between white and non-white patients were also identified. In the pre-diagnosis stage, many patients felt self-conscious about their appearance and purchased over-the-counter products, most often topical treatments. The majority of patients sought care from a GP or dermatologist within 5 months of onset of psoriasis.

Notably, a significantly higher proportion of white patients received a diagnosis of psoriasis within 3 months of disease onset, whereas a significantly higher proportion of non-white patients had to wait between 3 and 5 years for a diagnosis. A greater percentage of non-white patients were diagnosed with psoriasis by a dermatologist, which may suggest that psoriasis in patients with SoC may be less well recognized by primary care providers, and may more commonly require evaluation by a skin care specialist to establish a diagnosis. Bothersome symptoms and appearance-related signs were identified as the most significant triggers driving patients to seek a diagnosis and led to receiving a confirmed psoriasis diagnosis within 6 months of disease onset, most often by a dermatologist and less frequently by a GP. Approximately one-quarter of patients were initially misdiagnosed. Earlier recognition of psoriasis in primary care may represent an opportunity to reduce diagnostic delays, particularly for patients with SoC. Given the limited representation of diverse skin tones in traditional medical training, targeted educational initiatives for general practitioners may help improve diagnostic confidence and timely referral.

In the treatment stage, about half of the overall patients began therapy immediately after diagnosis, with topical therapies being the most frequently used. More than half of the patients reported receiving ongoing care from a dermatologist, and slightly fewer from a GP. Healthcare providers were the primary source of psoriasis management information; however, patients expressed a need for additional education on treatment options and access to resources, including online information, to better manage their condition.

The findings from this survey study suggest that there are significant differences in the experience of patients with psoriasis depending on their skin colour. Non-white patients were more likely to report experiencing stigma and held more negative perceptions regarding the prevalence and severity of psoriasis within their community, despite often having greater affected BSA. These results are consistent with previous studies conducted using the Dermatology Life Quality Index (DLQI) that found that African American and Hispanic/Latino patients with psoriasis experienced greater impairment in health-related quality of life than white patients [7]. Observed differences in quality of life outcomes among patients of varying ethnic background may stem, in part, from cultural variations in how skin conditions such as psoriasis are perceived, as well as the influence of post-inflammatory dyspigmentation, which is typically more pronounced in patients with SoC [7].

Further, non-white patients tended to be more likely to consult dermatologists for all their psoriasis care and used non-topical therapies more frequently than white patients. These differences may reflect greater disease severity at presentation and a higher need for advanced treatment, potentially influenced by challenges in recognizing erythema in darker skin tones and the limited representation of patients with SoC in medical education materials [8]. However, these findings challenge the results of earlier studies that highlighted a lower rate of biologic therapy utilization in non-white patients with psoriasis due to apprehension and unfamiliarity with biologics [9, 10]. Moreover, non-white patients faced more challenges in gaining access to effective treatments, which may partly explain their greater interest in learning about patient advocacy and local support groups. Although certain clinical trial analyses have shown unclear or more limited treatment safety and efficacy outcomes in participants with SoC [5], other evidence, including findings from the VISIBLE study [11], provides additional insights. VISIBLE represents the first large-scale, randomized clinical trial specifically designed to evaluate psoriasis and treatment outcomes with guselkumab in participants with skin of colour, and its results suggest that treatment responses are comparable across skin tones [12]. In this survey, we found that white participants were more likely to receive care for their psoriasis by GPs, were more quickly diagnosed with psoriasis after onset and started on treatment and faced fewer challenges throughout their psoriasis care journey.

While this survey study provides a comprehensive review of the experience of patients with psoriasis and stratifies participants by ethnicity to evaluate differences between white versus non-white patients, important limitations must be considered when interpreting its findings. Survey respondents may represent a population more knowledgeable and more motivated to act on managing their disease. Thus, the findings from this study may not be generalizable to broader patient populations. The survey was made available online through a patient portal, which may have limited its accessibility to more patients. The provision of closed-ended response options prevented patients from elaborating on their experiences, leaving room for interpretation. Nonetheless, the use of multiple reminder notifications and a wide range of response choices for most questions likely enhanced participation and the comprehensiveness of the responses, supporting the relevance of these findings to the broader population of patients with psoriasis. Additionally, while subgroup analyses comparing lighter versus darker skin tone within the non-white population were conducted, small sample sizes limited the ability to detect clear or consistent differences.

Conclusion

In conclusion, skin of colour is an important determinant of how psoriasis is perceived and managed, with both GPs and dermatologists playing a key role in shaping the patient experience. Non-white patients were found to face barriers that compromise the quality and timeliness of diagnosis and care. First-hand survey data derived from this study contribute to uncovering these disparities, including underdiagnosis, misdiagnosis and delayed treatment, by providing insight into real-world patient experiences. Documenting such gaps in the management of psoriasis is essential for guiding culturally competent care and developing targeted interventions and policies to support patients with SoC. These findings also underscore the need for broader representation in clinical research, as exemplified by the VISIBLE trial with guselkumab, which aimed to better understand outcomes in patients with SoC and psoriasis [11].

Author Contribution

H Chih-ho Hong and Marissa Joseph: writing, reviewing and editing. Laura Park-Wyllie, Tessa Carr and Omair Lakhani: conceptualization, writing, reviewing and editing. Frankie Tai and Saad Mirza: reviewing and editing. All authors meet the ICMJE requirements for authorship.

Funding

This study was supported by Johnson & Johnson, which also covered the publication fees for this article, including the Rapid Service Fee.

Data Availability

The datasets generated during and/or analyzed during the current study are not publicly available due to confidentiality and contractual restrictions.

Declarations

Conflict of Interest

H Chih-ho Hong has been an investigator for and/or a consultant for and/or received honorarium from: Abbvie, Amgen, Arcutis, ASLAN pharmaceutics, Bausch Health, Biocon, Boehringer-Ingelheim, Bristol Meyers Squibb, Celgene, Celltrion, Cutanea, Dermira, Dermavant, DS Biopharma, Eli-Lilly, Evelo Biosciences, Galderma, GSK, Incyte, Iqvia, JAMP Pharma, Janssen, Leo Pharma, Medimmune, Merck, Mirimar, Novartis, Organon, Oruka, Pfizer, Regeneron, Sanofi-Genzyme, Sun Pharma, Takeda and UCB. Marissa Joseph has received honoraria for consulting and/or speaking from: AbbVie, Amgen, Arcutis, Bausch, Boehringer Ingelheim, BMS, Celgene, Eli Lilly, Galderma, Incyte, Janssen, Kenvue, Leo, Loreal, Novartis, Pierre Fabre, Pfizer, Sanofi Genzyme, Sun Pharma and UCB. Frankie Tai, Omair Lakhani and Laura Park-Wyllie are employees of Johnson & Johnson at the time of the study and manuscript development and may own stock or stock options in Johnson & Johnson. Saad Mirza was an employee of Johnson & Johnson at the time of the study and manuscript development and may own stock or stock options in Johnson & Johnson. Saad Mirza has no current institutional affiliation. Tessa Carr was a PharmD student and intern at Johnson & Johnson at the time this work was conducted and is currently a PharmD student at the University of Toronto; she reports no additional conflicts of interest.

Ethical approval

Ethics committee, institutional review board (IRB) or research ethics board (REB) approval was not required for this study as it was conducted as an online quantitative market research survey and did not involve interventions with human subjects. Accordingly, no ethics committee name(s), reference number(s) or IRB approval number are available. The study was conducted in accordance with applicable legal requirements and industry standards for market research. All participants provided informed consent to participate prior to inclusion in the study. All responses were fully anonymized, and no identifiable personal information was collected; therefore, consent to publish identifiable information was not applicable.