BACKGROUND Patient-generated health data (PGHD) from different sources including social media were recently promoted to generate new insights into personal experience of chronic disease such as psoriasis. Psoriasis is a relatively frequent and chronic immune-mediated inflammatory disease that is typically characterised by the appearance of red or silver scaly plaques, typically distributing the elbows, knees, and scalp. The disease induces an important psychosocial burden with mood disorders including depression and anxiety higher than in the general population. OBJECTIVE The objective of this qualitative study is therefore to understand the experience of French-speaking patients with psoriasis by analysing the content of posts on several social media. METHODS To investigate more finely and accurately the lived experience of patients with psoriasis, spontaneous conversations on psoriasis published between 2017 and 2020 have been extracted from the following social networks: forums and blogs, Facebook, Twitter and Instagram. Data analysis has allowed the classification of verbatim reports into five topics reflecting the burden induced by the psoriasis. RESULTS Patients with psoriasis described major consequences of the symptoms on their mood with negative thoughts such as shame and helplessness, and emotions such as sadness. A significant part of publications revealed suicidal thoughts. Patients demonstrated sometimes paroxysmic anxiety, due to the risk of symptoms exacerbation and side effects of treatments. The burden of the disease was highly impacted by pain induced by inflammatory plaques on the skin and psoriatic arthritis. Itch was described as one the most severe symptoms providing skin lesions and sleep disorders (related to depressive and anxious states). Patients’ body image was related to low self-esteem, depreciation and shame, notably in case of visible lesions. Stigmatisation and self-stigma were reported with consequences on work, social relationships and projection into the future. Stress has been considered as a cause as well as a consequence of the disease but remained controversial. Heritability has been viewed as a matter of culpability in case of transmission and of fear for future generations. Patients described some difficulties to find the accurate medical resources and to obtain an exact diagnosis. Globally the health pathway seemed complicated for patients with psoriasis. They have reported disappointing results of medications with sometimes severe side effects. Numerous patients have described their use of alternative and complementary medicines. CONCLUSIONS To our knowledge, this is the first study of spontaneous conversations on social media in French population with psoriasis. The analysis of these patient-generated health data highlights the major psychosocial burden of psoriasis.

Psoriasis can affect diverse facets of patients' lives over time and may lead to irreversible cumulative life course impairment (CLCI). The CLCI concept initially described in 2010 in the context of psoriasis encompasses the intricate interaction between physical, psychological, social and economic burden and is influenced by several factors such as coping mechanisms, personality and external factors. CLCI assessment is conducted to characterise and ultimately mitigate or prevent the patient's burden over the life course. This review aims to give a comprehensive overview of the development and use of the CLCI concept in psoriasis since its inception. A narrative literature review was conducted from 2010 to 2022 and included 19 publications. As original studies on CLCI are scarce, this review primarily relied on case studies and those without longitudinal assessment. The core components of CLCI burden identified in patients' narratives include physical impairment, psychological impairment, stigma, socioeconomic burden and modulating factors. Modulating factors are crucial to mitigate the burden but are not equally explored. The burden associated with psoriasis stands across all dimensions covered by CLCI, thus confirming its suitability in clinical management and future studies. A better understanding of CLCI can support physicians and researchers in improving patients' lives and raising awareness on the necessity to develop early, efficient and patient‐centric interventions. The practical and systematic adoption of CLCI yet relies on the development and psychometric validation of a questionnaire that measures it.