Global Delphi consensus on treatment goals for generalized pustular psoriasis

Background Generalized pustular psoriasis (GPP) is a chronic, systemic, neutrophilic inflammatory disease. A previous Delphi panel established areas of consensus on GPP, although patient perspectives were not included and aspects of treatment goals remained unclear.Objectives To identify and achieve consensus on refined, specific treatment goals for GPP treatment via a Delphi panel with patient participation.Methods Statements were generated based on a systematic literature review and revised by a Steering Committee. Statements were categorized into overarching principles, and short- and long-term treatment goals. A global panel of 30 dermatologists and 3 patient representatives voted in agreement or disagreement with each statement. Consensus was defined as >= 80% approval by the panellists.Results Consensus was reached in the first round of voting and >= 90% agreement was reached for 23 of 26 statements. In summary, GPP requires a timely, tailored treatment plan, co-developed by patients and physicians, that involves a multidisciplinary approach and addresses the complexity, heterogeneity and chronicity of the disease. Short-term treatment goals should include pustule clearance within 7 days and prevention of pustule recurrence, reduction of cutaneous symptom burden (-4 or more points on the Itch and Skin Pain Numeric Rating Scale), improvement in systemic symptoms (e.g. resolution of fever within 3 days of treatment initiation and reduced fatigue), prevention of life-threatening complications and progressive improvement of inflammatory biomarkers. In patients with comorbid psoriatic diseases, treatment decisions should prioritize GPP. Long-term treatment goals should include minimizing disease activity through flare prevention and symptom control between flares, sustained disease control, management of comorbidities and improvement in quality of life (QoL). Small differences in perception between patients and physicians regarding the importance of certain treatment goals (e.g. avoiding hair and/or nail loss to improve QoL), reflect the complexity of assessing treatment goals and emphasize the need for a patient-centred approach.Conclusions In the first global Delphi panel in GPP to include patient perspectives, consensus between dermatologists and patients was achieved on overarching principles of treatment, and short- and long-term treatment goals for GPP. These findings provide valuable insights for developing guidelines that consider the perspectives of patients and physicians in the treatment of GPP. In the first global Delphi panel for generalized pustular psoriasis (GPP) to include patient perspectives, consensus between dermatologists and patients was achieved on overarching principles of treatment, and short- and long-term treatment goals for GPP. Generalized pustular psoriasis ('GPP' for short) is a rare and life-long inflammatory disease that causes skin redness and blisters. People with GPP often experience a high temperature, tiredness and skin pain. The symptoms can suddenly become worse in episodes called 'flares'. Until now, doctors have not had standard treatment goals for GPP, or agreed ways to measure if a medicine is working well.To determine what treatment goals are important to people with GPP and their doctors, a panel of 30 expert doctors and 3 patient representatives from 24 countries took part in a survey. The panel voted on 26 statements related to GPP treatment. The statements were prepared by a team of expert doctors. After 1 round of voting, the panel agreed on all the statements. Regarding GPP treatment, at least 32 out of 33 panellists agreed on each statement. The panel agreed that GPP is a complex, life-long disease, and that treatment should be started quickly, be tailored to each patient and involve doctors from other specialties, as well as dermatologists (skin doctors). Doctors and patient representatives gave different levels of importance to some treatment goals. For example, the 3 patient representatives all agreed that avoiding losing their hair/nails was important, but only 24 out of 30 doctors held the same view.This particular type of survey on GPP treatment goals was the first to include patient representatives. Panellists agreed on all short-term, long-term and overall treatment goals for GPP.