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

Abstract

BackgroundThe 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.MethodsWe 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.ResultsOut 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.ConclusionThis 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.

PRIDD, a new tool assessing disease burden in dermatology on the horizon

“…This resulted in 27 items covering five domains of impact: physical, daily life and responsibilities, psychological, social and financial impact. The psychological items are extensive and seems to be especially relevant for dermatology patients 2 …”

“…The researchers took a global approach across all regions for the PRIDD development, although African, South‐East Asian and East Mediterranean participants were still underrepresented. They involved a high number of participants of all adult age categories suffering from a wide range of skin diseases, such as inflammatory or autoimmune diseases, infection and cancer 2 …”

The burden of skin disease in Europe

“…In parallel to EADV's Burden of Skin Disease survey, GlobalSkin, the International Alliance of Dermatology Patient Organizations, has conducted a European Delphi study to better understand the main impacts of skin diseases from the patient's perspective. Trialonis‐Suthakharan et al 7 highlight the significant psychological impacts of skin diseases on patients and point to the need for a new approach to assess the impact of skin diseases, which measures the whole person impact, including broader psychological and social aspects, disability and threats, including threat of dying.…”