Albertien M van Eerde, Ana Teixeira, Flavia Galletti, Michal Maternik, Valentina Capone, Rik Westland, Jaap Mulder, Jan Halbritter, Thomas Osterholt, Valentina Neukel, Lutz T Weber, Max C Liebau, Franz Schaefer, Stefan Kohl
{"title":"ChatGPT在告知罕见肾病患者和家属方面的风险和益处：欧洲罕见肾病参考网络（ERKNet）的探索性评估","authors":"Albertien M van Eerde, Ana Teixeira, Flavia Galletti, Michal Maternik, Valentina Capone, Rik Westland, Jaap Mulder, Jan Halbritter, Thomas Osterholt, Valentina Neukel, Lutz T Weber, Max C Liebau, Franz Schaefer, Stefan Kohl","doi":"10.1007/s00467-025-06746-w","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Rare diseases affect fewer than 1 in 2000 individuals, but approximately 150 rare kidney diseases account for about 10% of the chronic kidney disease (CKD) population, impacting millions across Europe and globally. The scarcity of medical experts for these conditions results in an unmet need for accurate and helpful patient information. Large language models like ChatGPT may offer a technological solution to assist medical professionals in educating patients and improving doctor-patient communication. We hypothesized that ChatGPT could provide accurate responses to frequently asked basic questions from patients with rare kidney diseases.</p><p><strong>Methods: </strong>Medical professionals and members of European Patient Advocacy Groups (ePAGs) affiliated with the European Rare Kidney Disease Reference Network (ERKNet) simulated patient-ChatGPT interactions using a Microsoft forms questionnaire and ChatGPT 3.5 and 4.0. Participants selected any rare kidney disease for a structured conversation with ChatGPT 3.5 or 4.0. Responses were evaluated for accuracy and helpfulness.</p><p><strong>Results: </strong>Forty-six ERKNet experts and 12 ePAGs from 13 European countries participated in this study. ChatGPT provided scientifically accurate and helpful information on 28 randomly selected rare kidney diseases, including prognostic information and genetic testing guidance. Participants expressed neutral positions regarding ChatGPT's recommendations on alternative treatments, second opinions, and other information sources. While ChatGPT generally was perceived as helpful and empathetic, concerns about patient safety persisted.</p><p><strong>Conclusions: </strong>ChatGPT exhibited substantial potential in addressing patient inquiries regarding rare kidney diseases in a real-world context. While it demonstrated resilience against misinformation in this application, careful human oversight remains essential and indispensable.</p>","PeriodicalId":19735,"journal":{"name":"Pediatric Nephrology","volume":" ","pages":""},"PeriodicalIF":2.6000,"publicationDate":"2025-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Risks and benefits of ChatGPT in informing patients and families with rare kidney diseases: an explorative assessment by the European Rare Kidney Disease Reference Network (ERKNet).\",\"authors\":\"Albertien M van Eerde, Ana Teixeira, Flavia Galletti, Michal Maternik, Valentina Capone, Rik Westland, Jaap Mulder, Jan Halbritter, Thomas Osterholt, Valentina Neukel, Lutz T Weber, Max C Liebau, Franz Schaefer, Stefan Kohl\",\"doi\":\"10.1007/s00467-025-06746-w\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Rare diseases affect fewer than 1 in 2000 individuals, but approximately 150 rare kidney diseases account for about 10% of the chronic kidney disease (CKD) population, impacting millions across Europe and globally. The scarcity of medical experts for these conditions results in an unmet need for accurate and helpful patient information. Large language models like ChatGPT may offer a technological solution to assist medical professionals in educating patients and improving doctor-patient communication. We hypothesized that ChatGPT could provide accurate responses to frequently asked basic questions from patients with rare kidney diseases.</p><p><strong>Methods: </strong>Medical professionals and members of European Patient Advocacy Groups (ePAGs) affiliated with the European Rare Kidney Disease Reference Network (ERKNet) simulated patient-ChatGPT interactions using a Microsoft forms questionnaire and ChatGPT 3.5 and 4.0. Participants selected any rare kidney disease for a structured conversation with ChatGPT 3.5 or 4.0. Responses were evaluated for accuracy and helpfulness.</p><p><strong>Results: </strong>Forty-six ERKNet experts and 12 ePAGs from 13 European countries participated in this study. ChatGPT provided scientifically accurate and helpful information on 28 randomly selected rare kidney diseases, including prognostic information and genetic testing guidance. Participants expressed neutral positions regarding ChatGPT's recommendations on alternative treatments, second opinions, and other information sources. While ChatGPT generally was perceived as helpful and empathetic, concerns about patient safety persisted.</p><p><strong>Conclusions: </strong>ChatGPT exhibited substantial potential in addressing patient inquiries regarding rare kidney diseases in a real-world context. While it demonstrated resilience against misinformation in this application, careful human oversight remains essential and indispensable.</p>\",\"PeriodicalId\":19735,\"journal\":{\"name\":\"Pediatric Nephrology\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":2.6000,\"publicationDate\":\"2025-04-16\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Pediatric Nephrology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s00467-025-06746-w\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pediatric Nephrology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s00467-025-06746-w","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"PEDIATRICS","Score":null,"Total":0}
Risks and benefits of ChatGPT in informing patients and families with rare kidney diseases: an explorative assessment by the European Rare Kidney Disease Reference Network (ERKNet).
Background: Rare diseases affect fewer than 1 in 2000 individuals, but approximately 150 rare kidney diseases account for about 10% of the chronic kidney disease (CKD) population, impacting millions across Europe and globally. The scarcity of medical experts for these conditions results in an unmet need for accurate and helpful patient information. Large language models like ChatGPT may offer a technological solution to assist medical professionals in educating patients and improving doctor-patient communication. We hypothesized that ChatGPT could provide accurate responses to frequently asked basic questions from patients with rare kidney diseases.
Methods: Medical professionals and members of European Patient Advocacy Groups (ePAGs) affiliated with the European Rare Kidney Disease Reference Network (ERKNet) simulated patient-ChatGPT interactions using a Microsoft forms questionnaire and ChatGPT 3.5 and 4.0. Participants selected any rare kidney disease for a structured conversation with ChatGPT 3.5 or 4.0. Responses were evaluated for accuracy and helpfulness.
Results: Forty-six ERKNet experts and 12 ePAGs from 13 European countries participated in this study. ChatGPT provided scientifically accurate and helpful information on 28 randomly selected rare kidney diseases, including prognostic information and genetic testing guidance. Participants expressed neutral positions regarding ChatGPT's recommendations on alternative treatments, second opinions, and other information sources. While ChatGPT generally was perceived as helpful and empathetic, concerns about patient safety persisted.
Conclusions: ChatGPT exhibited substantial potential in addressing patient inquiries regarding rare kidney diseases in a real-world context. While it demonstrated resilience against misinformation in this application, careful human oversight remains essential and indispensable.
期刊介绍：
International Pediatric Nephrology Association
Pediatric Nephrology publishes original clinical research related to acute and chronic diseases that affect renal function, blood pressure, and fluid and electrolyte disorders in children. Studies may involve medical, surgical, nutritional, physiologic, biochemical, genetic, pathologic or immunologic aspects of disease, imaging techniques or consequences of acute or chronic kidney disease. There are 12 issues per year that contain Editorial Commentaries, Reviews, Educational Reviews, Original Articles, Brief Reports, Rapid Communications, Clinical Quizzes, and Letters to the Editors.
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