Universität zu Köln

van Eerde, Albertien M., Teixeira, Ana, Galletti, Flavia, Maternik, Michal, Capone, Valentina, Westland, Rik, Mulder, Jaap, Halbritter, Jan, Osterholt, Thomas ORCID: 0000-0001-5047-0252, Neukel, Valentina, Weber, Lutz T. ORCID: 0000-0003-4116-598X, Liebau, Max C. ORCID: 0000-0003-0494-9080, Schaefer, Franz and Kohl, Stefan ORCID: 0000-0001-9600-8231 (2025). 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). Pediatric Nephrology, 40 (9). pp. 2899-2905. Springer Nature. ISSN 0931-041X

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Abstract

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

Item Type:	Article
Creators:	Creators Email ORCID ORCID Put Code van Eerde, Albertien M. UNSPECIFIED UNSPECIFIED UNSPECIFIED Teixeira, Ana UNSPECIFIED UNSPECIFIED UNSPECIFIED Galletti, Flavia UNSPECIFIED UNSPECIFIED UNSPECIFIED Maternik, Michal UNSPECIFIED UNSPECIFIED UNSPECIFIED Capone, Valentina UNSPECIFIED UNSPECIFIED UNSPECIFIED Westland, Rik UNSPECIFIED UNSPECIFIED UNSPECIFIED Mulder, Jaap UNSPECIFIED UNSPECIFIED UNSPECIFIED Halbritter, Jan UNSPECIFIED UNSPECIFIED UNSPECIFIED Osterholt, Thomas UNSPECIFIED https://orcid.org/0000-0001-5047-0252 UNSPECIFIED Neukel, Valentina UNSPECIFIED UNSPECIFIED UNSPECIFIED Weber, Lutz T. UNSPECIFIED https://orcid.org/0000-0003-4116-598X UNSPECIFIED Liebau, Max C. UNSPECIFIED https://orcid.org/0000-0003-0494-9080 UNSPECIFIED Schaefer, Franz UNSPECIFIED UNSPECIFIED UNSPECIFIED Kohl, Stefan UNSPECIFIED https://orcid.org/0000-0001-9600-8231 UNSPECIFIED
URN:	urn:nbn:de:hbz:38-797490
Identification Number:	10.1007/s00467-025-06746-w
Journal or Publication Title:	Pediatric Nephrology
Volume:	40
Number:	9
Page Range:	pp. 2899-2905
Number of Pages:	7
Date:	16 September 2025
Publisher:	Springer Nature
ISSN:	0931-041X
Language:	English
Faculty:	Central Institutions / Interdisciplinary Research Centers Faculty of Medicine
Divisions:	Faculty of Medicine > Innere Medizin > Klinik II für Innere Medizin - Nephrologie, Rheumatologie, Diabetologie und Allgemeine Innere Medizin Faculty of Medicine > Kinder- und Jugendmedizin > Klinik und Poliklinik für Kinder- und Jugendmedizin Faculty of Medicine > Sonstiges > Zentrum für seltene Erkrankungen Zentrum für Molekulare Medizin
Subjects:	Medical sciences Medicine
['eprint_fieldname_oa_funders' not defined]:	Publikationsfonds UzK
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/79749