Patient prioritisation of impact items to develop the patient-reported impact of dermatological diseases (PRIDD) measure: European Delphi data.

BACKGROUND: The Global Research on the Impact of Dermatological Diseases (GRIDD) project is developing a patient-reported measure of the impact of dermatological disease on the patient's life called Patient Reported Impact of Dermatological Diseases (PRIDD). We developed a list of 263 potential impact items through a global qualitative interview study with 68 patients. We next conducted a Delphi study to seek consensus on which of these items to prioritize for inclusion in PRIDD. This study aims to explore patterns in demographic (e.g. country) and clinical variables (e.g. disease group) across the impacts ranked as most important to European dermatology patients. METHODS: We conducted a modified, two rounds Delphi study, testing the outcomes from the previous qualitative interview study. Adults (≥18 years) living with a dermatological disease were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) membership network. The survey consisted of a demographic questionnaire and 263 impact items and was available in six languages. Quantitative data were collected using ranking scales and analysed against a priori consensus criteria. Qualitative data were collected using free-text responses and a Framework Analysis was conducted. European data were obtained, and descriptive statistics, including multiple subgroup analyses, were performed. RESULTS: Out of 1154 participants, 441 Europeans representing 46 dermatological disease from 25 countries participated. The results produced a list of the top 20 impacts reported by European patients, with psychological impacts accounting for the greatest proportion. CONCLUSION: This study identified what patients consider to be the most important issues impacting their lives as a result of their dermatological disease. The data support previous evidence that patients experience profound psychological impacts and require psychological support. The findings can inform research, clinical practice and policy by indicating research questions and initiatives that are of most benefit to patients.

Translating the WHA resolution in a member state: towards a German programme on 'Destigmatization' for individuals with visible chronic skin diseases.

BACKGROUND: Even today, a substantial number of individuals with visible skin diseases still suffer from incomprehension and stigmatization. About 10 million people are affected by such diseases in Germany. The WHO strongly urges member states to take measures against stigmatization in skin diseases. OBJECTIVES: Objectives are the development of an action programme to raise awareness and address stigmatization. Therefore, conception, development and testing of interventions for the destigmatization of persons with skin diseases in Germany will be carried out. METHODS: A series of actions addressing decision makers, politicians and the Federal Ministry of Health were initiated, all based on the World Health Assembly (WHA). Argumentation was largely based on data from health services research. Supported by the Federal Ministry of Health, a concept against stigmatization was developed by an expert consortium of researchers, dermatologists and patients. Specific strategies of structured destigmatization between those affected and those not will be developed and scientifically evaluated. RESULTS: The activities addressed to politics were - to a large extent - successfully and financially supported by a 3-year programme (2018-2020), designed to develop interventions against stigma. It was funded by the Federal Ministry of Health. The project includes conception and development, intervention and evaluation, data analyses and development of a long-term concept. CONCLUSIONS: The WHO's call against stigmatization in psoriasis (resolution WHA67.9 and global report on psoriasis 2016) was taken into account and developed into a destigmatization programme supported by the German government and German politicians. This has been achieved by successful collaborations between dermatologists, researchers, patients and policymakers. Next step will be the testing of interventions in situations and surroundings, where stigmatization usually occurs. The data will be used for the implementation of a long-term concept that can be used to continue destigmatization in Germany far beyond the project's initial phase.