OBJECTIVE: This patient perspective study aimed to explore the emotional and psychosocial burdens faced by patients with psoriasis in Malaysia and their attitudes toward current psoriasis treatment.
METHODS: Adult patients with mild or moderate-to-severe plaque psoriasis, preferably with concomitant psoriatic arthritis, participated in a patient advisory board meeting along with a senior consultant dermatologist. Patients had to describe their initial symptoms, time of diagnosis, misdiagnosis, treatment initiation delays, treatment course, flare-ups, psychosocial impact, and QoL associated with psoriasis.
RESULTS: The 11 participating patients had a mean age of 46 years with mean age of psoriasis diagnosis and an average year of suffering with psoriasis being 21.9 years and 24.5 years, respectively. The most common initial symptom of psoriasis was itching (62.5%), particularly of the scalp followed by itchiness and red patches on skin. Most patients (90%) reported initial misdiagnosis with other skin diseases by their primary care physicians (PCPs), which led to delayed treatment initiation. Most patients reported an emotional impact of psoriasis, including low self-esteem (18%), lack of confidence (27%), shock (18%), sadness (9%), and outrage (9%). Social discrimination/stigmatization in public places and at work (45%), and even from relatives (18%) was another reported challenge. However, 73% of patients were highly satisfied with the current treatment. Overall, the patients agreed that the lack of public awareness of psoriasis was responsible for the social stigma.
CONCLUSIONS: The evidence obtained from this qualitative study indicated that psoriasis has a significant emotional and psychological impact on the patients affecting their QoL. Lack of awareness of the disease among PCPs, patients, and the public is a major challenge leading to poor treatment outcomes.
OBJECTIVE: To develop an international consensus definition and diagnostic criteria for GPP using the modified Delphi method.
EVIDENCE REVIEW: The rarity of GPP presents a challenge in acquiring comprehensive published clinical data necessary for developing standardized definition and criteria. Instead of relying on a literature search, 43 statements that comprehensively addressed the fundamental aspects of the definitions and diagnostic criteria for GPP were formulated based on expert reviews of 64 challenging GPP cases. These statements were presented to a panel of 33 global GPP experts for voting, discussion, and refinements in 2 virtual consensus meetings. Consensus during voting was defined as at least 80% agreement; the definition and diagnostic criteria were accepted by all panelists after voting and in-depth discussion.
FINDINGS: In the first and second modified Delphi round, 30 (91%) and 25 (76%) experts participated. In the initial Delphi round, consensus was achieved for 53% of the statements, leading to the approval of 23 statements that were utilized to develop the proposed definitions and diagnostic criteria for GPP. During the second Delphi round, the final definition established was, "Generalized Pustular Psoriasis is a systemic inflammatory disease characterized by cutaneous erythema and macroscopically visible sterile pustules." It can occur with or without systemic symptoms, other psoriasis types, and laboratory abnormalities. GPP may manifest as an acute form with widespread pustules or a subacute variant with an annular phenotype. The identified essential criterion was, "Macroscopically visible sterile pustules on erythematous base and not restricted to the acral region or within psoriatic plaques."
CONCLUSIONS AND RELEVANCE: The achievement of international consensus on the definition and diagnostic criteria for GPP underscores the importance of collaboration, innovative methodology, and expert engagement to address rare diseases. Although further validation is needed, these criteria can serve as a reference point for clinicians, researchers, and patients, which may contribute to more accurate diagnosis and improved management of GPP.