原发性胆道胆管炎患者的症状报告:使用交互式应用程序检测症状的负担更高

IF 2 4区 医学 Q3 GASTROENTEROLOGY & HEPATOLOGY Digestive Diseases Pub Date : 2025-01-14 DOI:10.1159/000543229
Jimmy Daza, Nathally Espinosa-Montagut, Achim Kautz, Diane Langenbacher, Michael Hetjens, Fabian Siegel, Matthias P Ebert, Andreas Teufel
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引用次数: 0

摘要

原发性胆道胆管炎(PBC)是一种慢性自身免疫性肝脏疾病,可引起胆管破坏和炎症,因症状多样而影响患者的生活质量。数字症状追踪应用程序可以通过加强监测来改善患者护理。本可行性研究使用定制的症状追踪应用程序重新评估PBC患者的症状负担,重点关注其可用性、有效性以及对管理和生活质量的影响。方法:基于Kautz5 gUG“症状追踪器”,我们在REDCap中的应用程序允许用户记录四周内PBC症状,以及药物使用情况。伦理审批和数据安全符合德国法规。用户反馈被纳入更好的可用性。对症状资料进行标准化处理,采用R软件进行描述性统计和卡方检验。结果:2023年3月至2024年10月,共纳入患者207例(女性184例,男性20例),中位年龄51岁。在90名完成问卷的患者中,疲劳最为普遍(87.8%),其次是关节疼痛(80%)、注意力集中困难(74.4%)、腹部不适(70%)和恶心症状。其他常见症状包括腿部痉挛(50%)和足部肿胀(40%);黄疸少见(7.8%)。年龄较大的患者,特别是50-60岁的患者,报告的症状负担较高,但卡方检验显示年龄或性别之间没有显着差异。结论:我们的研究强调了PBC的显著症状负担,特别是疲劳和关节疼痛。虽然老年患者报告的症状更多,但没有观察到年龄或性别的显著差异。症状追踪应用程序增强了监测和患者参与,显示了数字工具在PBC管理中的潜力。需要进一步的研究来评估长期影响。
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Symptom Reporting in Patients with Primary Biliary Cholangitis: Higher Burden of Symptom Detection Using an Interactive App.

Introduction: Primary biliary cholangitis (PBC) is a chronic autoimmune liver disease causing bile duct destruction and inflammation, impacting patient's quality of life (QoL) due to variable symptoms. Digital symptom-tracker apps may improve patient care through enhanced monitoring. This study reassessed symptom burden in PBC patients using a tailored symptom-tracker app, focusing on its usability, effectiveness, and impact on management and QoL.

Methods: Based on Kautz5 gUG "Symptomtracker," our app in REDCap allowed users to log PBC symptoms over 4 weeks, alongside medication use. Ethics approval and data security complied with German regulations. User feedback was incorporated for better usability. Symptom data were standardized, and R software was used for descriptive statistics and Chi-square tests.

Results: From March 2023 to October 2024, 210 patients (190 female, 20 male) were enrolled, median age 51 years. Among 90 patients who completed the questionnaire, fatigue was most prevalent (87.8%), followed by joint pain (80%), concentration difficulties (74.4%), abdominal discomfort (70%), and sicca symptoms. Other common symptoms were leg cramps (50%) and swollen feet (40%); jaundice was rare (7.8%). Older patients, especially those aged 50-60, reported a higher symptom burden, but Chi-square tests showed no significant differences across age or gender.

Conclusion: This study highlights a significant symptom burden in PBC, particularly fatigue and joint pain. While older patients reported more symptoms, no significant differences were observed by age or gender. The symptom-tracker app enhanced monitoring and patient engagement, showing the potential of digital tools in PBC management. Further research is needed to evaluate long-term impacts.

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来源期刊
Digestive Diseases
Digestive Diseases 医学-胃肠肝病学
CiteScore
4.80
自引率
0.00%
发文量
58
审稿时长
2 months
期刊介绍: Each issue of this journal is dedicated to a special topic of current interest, covering both clinical and basic science topics in gastrointestinal function and disorders. The contents of each issue are comprehensive and reflect the state of the art, featuring editorials, reviews, mini reviews and original papers. These individual contributions encompass a variety of disciplines including all fields of gastroenterology. ''Digestive Diseases'' bridges the communication gap between advances made in the academic setting and their application in patient care. The journal is a valuable service for clinicians, specialists and physicians-in-training.
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