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A key principle of clinical studies and case reports is that they should reflect the demographics and epidemiology of the patient population concerned. Here, we have compiled a diverse group of clinical cases of generalized pustular psoriasis (GPP) to showcase the differences in GPP presentation in patients worldwide. We attempt to capture the broad spectrum of clinical presentations of GPP and showcase the diversity of the patient population. The patients included in this series are diverse in age, genetic background, skin phototype and medical history. Moreover, they present with a variety of clinical courses of GPP and different degrees of systemic involvement, and experience flares triggered by different inciting factors. The key learnings from this case series may support physicians in identifying and managing patients with this rare and multifaceted disease that can affect patients both physically and psychologically.
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Psoríase , Humanos , Psoríase/etiologia , Pele , Doença Aguda , Doença CrônicaRESUMO
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.
Assuntos
Artrite Psoriásica , Psoríase , Humanos , Artrite Psoriásica/diagnóstico , Qualidade de Vida , Estudos Transversais , Psoríase/terapia , Inquéritos e Questionários , Efeitos Psicossociais da Doença , Índice de Gravidade de DoençaRESUMO
INTRODUCTION: Topical treatments (TT) are widely used in psoriasis management. While psoriasis itself has been associated with diminished quality of life and mental well-being, the impact of TT remains underexplored. This study aimed to evaluate the burden of TT on the daily lives of patients with psoriasis, the convenience of the TT, and the choice criteria. METHODS: Patients were recruited across five countries (France, Germany, Italy, Spain, UK) by Wefight and the International Federation of Psoriasis Associations (IFPA) to complete a 29-item online survey. RESULTS: A total of 766 patients completed the survey (54% female, mean age of 53 years). The mean body surface area covered by psoriasis was 7%, predominantly on the scalp and elbows. Participants had been living with psoriasis for a mean duration of 18 years. Of the respondents, 34% reported feeling affected by their TT in their daily routines and activities. Those feeling affected were more likely to have a more complex disease, be using more treatments, or be diagnosed more recently compared to those less affected. Among those most affected by their TT, 27% reported a strong impact on mental health, 30% on sexual life, and 25% on physical activities, compared to 7%, 6% and 4% in those least affected, respectively. Both cohorts considered tolerability factors such as "does not cause itching/burning" and "good tolerability" as most important when choosing a topical. However, only least affected participants regarded convenience factors such as "does not run off," "ease of application," "does not leave stains" among others equally as important. CONCLUSION: Overall, one-third of patients report a significant burden of TT on their daily lives. These patients have different criteria of choice, highlighting the importance of communication between physicians and patients to tailor treatment to individual preferences, thereby enhancing adherence and treatment outcomes.
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INTRODUCTION: Psoriatic disease (PsD) is a chronic systemic disorder affecting numerous body areas, including skin and joints. Patients' perspectives regarding understanding their disease and dialogue with healthcare professionals (HCPs) on treatment strategies is becoming increasingly important in the holistic management of PsD. The study aim was to determine patients' understanding of the systemic nature of psoriasis and psoriatic arthritis (PsA) and the associated burden of living with these diseases. The relationship between patient and HCP was also evaluated. METHODS: Psoriasis and Beyond: The Global Psoriatic Disease Survey was a cross-sectional, quantitative online survey, conducted in patients with moderate to severe plaque psoriasis with or without concomitant PsA. Here, we report interim analysis results. RESULTS: A total of 1678 respondents from 11 countries were included. Overall, 31% of patients with psoriasis reported concomitant PsA, 80% of whom considered their PsA severity as moderately or highly active. In total, 63% of patients had heard the term "psoriatic disease". Few patients were aware of psoriasis manifestations (PsA, 29%; axial symptoms, 18%) or comorbidities (obesity, 21%; cardiovascular disease, 18%). Among patients with psoriasis and concomitant PsA, 70% reported swollen and tender joints, especially of the finger(s) and/or toe(s). Most patients (84%) experienced stigma and discrimination and reported a negative impact of their disease on work, emotions, and relationships. Overall, 42% of patients had never discussed treatment goals with their HCP. Patients who were dissatisfied with their current treatment (psoriasis, 15%; psoriasis with PsA, 14%) reported incomplete relief of skin symptoms (57%) and joint symptoms (45%) as primary reasons for dissatisfaction. CONCLUSIONS: Despite many patients having heard the term "psoriatic disease", the majority were unaware of the systemic nature and increased risk of comorbidities associated with PsD. This interim analysis highlights the need for patient education, productive patient-HCP dialogue, and shared decision-making in optimal disease management.