{"title":"欧洲系统性红斑狼疮患者的经历和未满足的需求:红斑狼疮欧洲2024年瑞士刀调查。","authors":"Alain Cornet , Zoe Karakikla Mitsakou , Jeanette Andersen , Sarah Dyball , Ricky Chotai , Annemarie Sluijmers , Cristiana Sieiro Santos , Aldevina Sturiene , Lucy Scarle , Daniel Guimarães de Oliveira , Nuria Zuniga , Elfriede Wijsma , Elisabetta Chessa , Laurent Arnaud","doi":"10.1016/j.autrev.2025.103838","DOIUrl":null,"url":null,"abstract":"<div><div>Systemic lupus erythematosus (SLE) is a complex autoimmune disease with important variations in disease burden across patients and European countries. In response to previous surveys revealing the burden of SLE on patients, Lupus Europe conducted the 2024 ‘Swiss Knife’ survey to further investigate disease burden, treatment goals, and patient-physician interactions in European patients living with lupus. Between April and May 2024, 4525 patients with self-reported physician-confirmed SLE across 36 European countries participated in an anonymous online study. Descriptive statistics were utilized to analyze responses related to SLE symptoms, treatment satisfaction, and unmet needs. Results indicated that fatigue (84.9 %), joint pain (72.8 %), and muscle pain (62.6 %) were the most prevalent symptoms, with fatigue notably under-addressed in treatment plans. The mean lupus burden score was high at 6.94 (SD: 1.95) on the 0–10 scale, highlighting a significant impact on quality of life, particularly in terms of fatigue and physical consequences. Notably, only 7.9 % of participants reported no disease flares in the past five years, contrasting with previous literature on remission rates. In terms of treatment goals, patients favored achieving low disease activity or remission without treatment, while satisfaction with current therapies was moderate, with 67.5 % expressing contentment but many indicating unmet needs, particularly regarding fatigue management and access to non-pharmacological therapies. The findings of Lupus Europe's 2024 Swiss Knife study underscore the necessity for improved communication between patients and healthcare professionals and the integration of patient-centered strategies to optimize SLE management and enhance quality of life across Europe.</div></div>","PeriodicalId":8664,"journal":{"name":"Autoimmunity reviews","volume":"24 8","pages":"Article 103838"},"PeriodicalIF":8.3000,"publicationDate":"2025-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Experiences and unmet needs of persons living with systemic lupus erythematosus in Europe: Lupus Europe's 2024 Swiss knife survey\",\"authors\":\"Alain Cornet , Zoe Karakikla Mitsakou , Jeanette Andersen , Sarah Dyball , Ricky Chotai , Annemarie Sluijmers , Cristiana Sieiro Santos , Aldevina Sturiene , Lucy Scarle , Daniel Guimarães de Oliveira , Nuria Zuniga , Elfriede Wijsma , Elisabetta Chessa , Laurent Arnaud\",\"doi\":\"10.1016/j.autrev.2025.103838\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><div>Systemic lupus erythematosus (SLE) is a complex autoimmune disease with important variations in disease burden across patients and European countries. In response to previous surveys revealing the burden of SLE on patients, Lupus Europe conducted the 2024 ‘Swiss Knife’ survey to further investigate disease burden, treatment goals, and patient-physician interactions in European patients living with lupus. Between April and May 2024, 4525 patients with self-reported physician-confirmed SLE across 36 European countries participated in an anonymous online study. Descriptive statistics were utilized to analyze responses related to SLE symptoms, treatment satisfaction, and unmet needs. Results indicated that fatigue (84.9 %), joint pain (72.8 %), and muscle pain (62.6 %) were the most prevalent symptoms, with fatigue notably under-addressed in treatment plans. The mean lupus burden score was high at 6.94 (SD: 1.95) on the 0–10 scale, highlighting a significant impact on quality of life, particularly in terms of fatigue and physical consequences. Notably, only 7.9 % of participants reported no disease flares in the past five years, contrasting with previous literature on remission rates. In terms of treatment goals, patients favored achieving low disease activity or remission without treatment, while satisfaction with current therapies was moderate, with 67.5 % expressing contentment but many indicating unmet needs, particularly regarding fatigue management and access to non-pharmacological therapies. The findings of Lupus Europe's 2024 Swiss Knife study underscore the necessity for improved communication between patients and healthcare professionals and the integration of patient-centered strategies to optimize SLE management and enhance quality of life across Europe.</div></div>\",\"PeriodicalId\":8664,\"journal\":{\"name\":\"Autoimmunity reviews\",\"volume\":\"24 8\",\"pages\":\"Article 103838\"},\"PeriodicalIF\":8.3000,\"publicationDate\":\"2025-05-20\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Autoimmunity reviews\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S1568997225000989\",\"RegionNum\":1,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"IMMUNOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Autoimmunity reviews","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S1568997225000989","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"IMMUNOLOGY","Score":null,"Total":0}
Experiences and unmet needs of persons living with systemic lupus erythematosus in Europe: Lupus Europe's 2024 Swiss knife survey
Systemic lupus erythematosus (SLE) is a complex autoimmune disease with important variations in disease burden across patients and European countries. In response to previous surveys revealing the burden of SLE on patients, Lupus Europe conducted the 2024 ‘Swiss Knife’ survey to further investigate disease burden, treatment goals, and patient-physician interactions in European patients living with lupus. Between April and May 2024, 4525 patients with self-reported physician-confirmed SLE across 36 European countries participated in an anonymous online study. Descriptive statistics were utilized to analyze responses related to SLE symptoms, treatment satisfaction, and unmet needs. Results indicated that fatigue (84.9 %), joint pain (72.8 %), and muscle pain (62.6 %) were the most prevalent symptoms, with fatigue notably under-addressed in treatment plans. The mean lupus burden score was high at 6.94 (SD: 1.95) on the 0–10 scale, highlighting a significant impact on quality of life, particularly in terms of fatigue and physical consequences. Notably, only 7.9 % of participants reported no disease flares in the past five years, contrasting with previous literature on remission rates. In terms of treatment goals, patients favored achieving low disease activity or remission without treatment, while satisfaction with current therapies was moderate, with 67.5 % expressing contentment but many indicating unmet needs, particularly regarding fatigue management and access to non-pharmacological therapies. The findings of Lupus Europe's 2024 Swiss Knife study underscore the necessity for improved communication between patients and healthcare professionals and the integration of patient-centered strategies to optimize SLE management and enhance quality of life across Europe.
期刊介绍:
Autoimmunity Reviews is a publication that features up-to-date, structured reviews on various topics in the field of autoimmunity. These reviews are written by renowned experts and include demonstrative illustrations and tables. Each article will have a clear "take-home" message for readers.
The selection of articles is primarily done by the Editors-in-Chief, based on recommendations from the international Editorial Board. The topics covered in the articles span all areas of autoimmunology, aiming to bridge the gap between basic and clinical sciences.
In terms of content, the contributions in basic sciences delve into the pathophysiology and mechanisms of autoimmune disorders, as well as genomics and proteomics. On the other hand, clinical contributions focus on diseases related to autoimmunity, novel therapies, and clinical associations.
Autoimmunity Reviews is internationally recognized, and its articles are indexed and abstracted in prestigious databases such as PubMed/Medline, Science Citation Index Expanded, Biosciences Information Services, and Chemical Abstracts.