{"title":"Patient–dermatologist gap in perception of disease burden and treatment of generalized pustular psoriasis in Japan","authors":"Nobutaka Yagi, T. Sasaki, Y. Tada","doi":"10.2217/frd-2022-0018","DOIUrl":null,"url":null,"abstract":"Aim: To investigate perceptions of dermatologists and patients with generalized pustular psoriasis (GPP), a severe skin disease involving systemic inflammation. Participants & methods: Selected dermatologists and their patients in Japan completed a web-based survey; topics included symptoms, disease information, treatment goals, and disease burden. Results: In total, 66 dermatologists and 46 patients took part. Nearly all patients (>90%) reported GPP-associated disease burden; the most frequently reported burden was skin symptoms. However, dermatologists prioritized systemic symptoms for treatment. Most patients aimed for completely clear skin, while fewer dermatologists considered it a treatment goal. Conclusion: Patient–dermatologist gaps exist in perceptions of treatment goals and communication, highlighting an important need for effective communication and shared decision-making to improve the disease burden of GPP.","PeriodicalId":432772,"journal":{"name":"Future Rare Diseases","volume":"25 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2023-02-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Future Rare Diseases","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2217/frd-2022-0018","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0
Abstract
Aim: To investigate perceptions of dermatologists and patients with generalized pustular psoriasis (GPP), a severe skin disease involving systemic inflammation. Participants & methods: Selected dermatologists and their patients in Japan completed a web-based survey; topics included symptoms, disease information, treatment goals, and disease burden. Results: In total, 66 dermatologists and 46 patients took part. Nearly all patients (>90%) reported GPP-associated disease burden; the most frequently reported burden was skin symptoms. However, dermatologists prioritized systemic symptoms for treatment. Most patients aimed for completely clear skin, while fewer dermatologists considered it a treatment goal. Conclusion: Patient–dermatologist gaps exist in perceptions of treatment goals and communication, highlighting an important need for effective communication and shared decision-making to improve the disease burden of GPP.