The patient's perspective on the burden of psoriasis: findings based on the ROCQ, an online survey

Abstract

Psoriasis is a common chronic skin disease, with well-characterised impact on quality-of life, however, no information is available on the lifetime impact of psoriasis on patients' lives. This descriptive cross-sectional web-based survey of patients with psoriasis, recruited from an online patient community, was conducted in France in 2021. Established questionnaires (Major Life-Changing Decision Profile-MLCDP, Dermatology Life Quality Index-DLQI, Hospital Anxiety and Depression Scale [HADS]), CAGE and BRIEF-COPE) were administered together with specially created questions. In total, 301 adult patients (mean age: 46.9 years; 56% women; mean disease duration: 20.3 years) participated in the study. The MLCDP showed that a mean of 9.4 life-changing decision items were affected; the most frequently cited domains being social life (n=258; 85.7%) and physical activity (n=226; 75.1%). In addition, 183 participants (60.7%) declared at least moderate impact of their psoriasis on their quality of life (score ≥6), with a median DLQI score of 7 [IQR: 3-13]. Impact on activities of daily living, such as social life, physical activities and marital relationships, was reported by over 50% of participants. Moreover, 107 (35.5%) declared being satisfied and 66 (21.9%) very satisfied with care. Over 50% of participants reported stigma related to being considered to have a contagious disease (n=182) or being unhygienic (n=163) and undesirable (n=167). Finally, 104 participants (34.6%) presented with clinically relevant anxiety and 32 (10.6%) clinically relevant depression (score ≥11) based on the HADS. Psoriasis carries a high psychological burden and has a strong long-term impact on social functioning.

Keywords: MLCDP; cumulative life course impairment; patient-reported outcome measures; psoriasis; psychological burden; social functioning.