{"title":"日本广泛性脓疱性牛皮癣患者-皮肤科医生对疾病负担和治疗的认知差距","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":"{\"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}","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}
Patient–dermatologist gap in perception of disease burden and treatment of generalized pustular psoriasis in Japan
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.