Patient Perspectives on Psoriatic Disease Burden: Results from the Global Psoriasis and Beyond Survey

Abstract

Background: Patients' understanding of the systemic nature of psoriatic disease (PsD) remains insufficiently explored.

Objectives: The objective of this study was to assess patients' understanding of PsD, associated comorbidities, disease burden, and relationships with healthcare professionals (HCPs).

Methods: Psoriasis and Beyond was a cross-sectional, quantitative online survey conducted in patients with a self-reported, physician-given diagnosis of moderate to severe psoriasis (body surface area [BSA] >5% to <10%, affecting sensitive and/or prominent body parts or BSA ≥10%) at its worst, with/without psoriatic arthritis (PsA). Patients were recruited through online panels by the Institut de Publique Sondage d'Opinion Secteur (Ipsos SA) and patient advocacy groups.

Results: Overall, 4,978 respondents with psoriasis completed the online survey from 20 countries across Australia, Asia, Europe, and the Americas; 30% of patients also reported having concomitant PsA. Overall, 69% of patients with psoriasis had heard that their disease was part of a systemic disease, and 60% had heard of the term "psoriatic disease." Despite this, recognition of common manifestations and comorbidities associated with PsD was low. Among psoriasis-only patients (n = 3,490), 38% screened positive using the Psoriasis Epidemiology Screening Tool (PEST), indicative of potential PsA. Overall, 48% of patients reported that their disease had a very large to extremely large effect on quality of life (QoL; Dermatology Life Quality Index [DLQI] score, 11-30); only 13% of patients reported no impact of the disease on QoL (DLQI, 0-1). Most patients had experienced stigma and discrimination (82%) and a negative impact on relationships (81%) in their lives. Overall, 59% of patients were not involved in deciding their treatment goals: 58% of all treated patients (n = 4,757) and 64% of treated patients with concomitant PsA (n = 1,409) were satisfied with their current treatment.

Conclusions: These results highlight that patients may not fully understand the systemic nature of their disease, were frequently uninvolved in deciding treatment goals, and were often not satisfied with their current treatment. Increasing patients' participation in their care can facilitate shared decision-making between patients and HCPs, which may result in better treatment adherence and patient outcomes. Furthermore, these data indicate that policies should be implemented to protect against stigma and discrimination, which are commonly experienced by patients with psoriasis.

Keywords: Patients’ perspective; Psoriasis; Psoriatic arthritis; Psoriatic disease; Quality of life; Survey; Systemic inflammation.

Fig. 1.

Patients’ understanding of psoriasis and PsA as part of a systemic disease. Pie charts demonstrating proportion of patients (%) who (a) had previously heard that their disease was a systemic disease or (b) had previously heard of the term “PsD.” Bar charts showing proportion of patients (%) who were aware of (c) manifestations related to their disease and (d) comorbidities related to their disease (could be related to either psoriasis or PsA). *Questioned only to patients with psoriasis only. CVD, cardiovascular disease; GI, gastrointestinal; PsA, psoriatic arthritis.

Fig. 2.

Current physical burden of psoriasis and PsA. a Bar graph showing the proportion of patients currently affected at sensitive areas by current disease severity. b Bar graph showing the proportion of patients with ≥1, ≥2, and ≥3 sensitive areas affected, overall and by current disease severity. c Pie chart illustrating the severity of disease in those patients with a diagnosis of PsA. d Bar chart showing current psoriasis severity (% mild, moderate, severe) by the presence of PsA manifestations. Mild psoriasis: BSA <5; moderate psoriasis: BSA ≥5 to <10; severe psoriasis: BSA ≥10. BSA, body surface area; PsA, psoriatic arthritis.

Fig. 3.

Effect of psoriasis on patients’ QoL. a Pie chart showing the effect on patients’ QoL DLQI ranges (see Methods section). b Bar chart showing the impact on QoL based on current disease severity. Data are represented as proportion of patients (%). Mild psoriasis: BSA <5; moderate psoriasis: BSA ≥5 to <10; severe psoriasis: BSA >10. BSA, body surface area; DLQI, Dermatology Life Quality Index; QoL, quality of life.

Fig. 4.

Effect of PsD on personal relationships and experiences of discrimination and coping mechanisms used. Bar charts showing the proportion of patients (%) reporting (a) an impact on sexual life and relationships and (b) experiences of discrimination and stigma. Results show the top ten most popular answers. Bar charts showing the proportion of patients with psoriasis (%) (c) and psoriasis-PsA (d) using specified coping mechanisms to deal with their disease. *Refusal to provide me a treatment at beauty clinic/cosmetic studio, people refusing to serve me in shops, being asked to leave a form of public transport. PsA, psoriatic arthritis; PsD, psoriatic disease.

Fig. 5.

Current treatments and effect of treatments for psoriasis and PsA. *Immunosuppressants (e.g., cyclosporine and azathioprine). Bar charts showing the proportion of patients (%) receiving specified treatments to treat psoriasis (a) and PsA (b). Bar charts showing the effect of the current treatments on psoriasis (c) and PsA (d) and the proportion of patients (%) achieving clear skin with the current psoriasis (e) and PsA (f) therapy. DMARD, disease-modifying antirheumatic drug; NSAID, nonsteroidal anti-inflammatory drug; PsA, psoriatic arthritis; UV, ultraviolet.

Fig. 6.

Treatment satisfaction overall and based on current treatments. a Bar graph showing the proportion of patients with psoriasis and psoriasis-PsA satisfied with their current treatment. b Frequency (%) of key reasons cited for dissatisfaction with current treatment regimen. Bar graphs showing patient satisfaction based on current treatments in patients with psoriasis (c) and psoriasis-PsA (d). DMARD, disease-modifying antirheumatic drug; NSAID, nonsteroidal anti-inflammatory drug; PsA, psoriatic arthritis; UV, ultraviolet.

Fig. 7.

Treatment goals. *These questions were only shown to patients with both psoriasis and PsA. a Pie charts showing the proportion of all patients, patients with psoriasis only, and patients with psoriasis-PsA who were involved in deciding treatment goals along with their HCP. Of all patients who had a discussion about treatment goals with their HCP (n = 4,052; navy and gray proportions in a), treatment goals (top 10) aligned with HCPs are shown (b). Personal treatment goals (top 10) described by patients (c). Data are represented as proportion of patients (%). HCP, healthcare professional; PsA, psoriatic arthritis.