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原发性胆汁性胆管炎患者的生活质量:塞尔维亚单中心经验。

Quality of Life in Patients with Primary Biliary Cholangitis: A Single-Center Experience in Serbia.

机构信息

School of Medicine, University of Belgrade, Belgrade, Serbia,

Clinic for Gastroenterology and Hepatology, Clinical Center of Serbia, Belgrade, Serbia,

出版信息

Dig Dis. 2020;38(6):515-521. doi: 10.1159/000506980. Epub 2020 Mar 6.

Abstract

BACKGROUND

Primary biliary cholangitis (PBC) is a chronic cholestatic autoimmune disease, predominantly affecting middle-aged women, which may progress to end-stage liver disease. We aimed to assess the quality of life (QoL) in patients with PBC given that social, economic, and geographical factor also influence QoL.

METHODS

This study included patients with diagnosed PBC according to the European Association for the Study of the Liver guidelines, who were treated for at least 6 months in order to allow adequate time for the initial burden of symptoms to subside. We used the PBC-40 questionnaire validated in the Serbian language.

RESULTS

The mean total PBC-40 score was 89.4 ± 29.3. The overall frequency of moderate and severe involvement in each domain was as follows: 84.9% (n = 107) in "Symptoms," 29.3% (n = 36) in "Itch," 76.4% (n = 97) in "Fatigue," 58.1% (n = 72) in "Cognitive," 77.2% (n = 98) in "Social," and 70.9% (n = 90) in "Emotional." There was a statistically significant negative correlation of disease duration and albumin score with the Emotional domain score. Furthermore, this domain showed a significant positive correlation with the Mayo score.

CONCLUSION

The present study demonstrates that patients with PBC have significant impairment in QoL with fatigue being the most prevalent symptom. The Social and Emotional domains were also significantly affected in these individuals, particularly in patients with peripheral edema who exhibited worse QoL that those who were euvolemic.

摘要

背景

原发性胆汁性胆管炎(PBC)是一种慢性胆汁淤积性自身免疫性疾病,主要影响中年女性,可能进展为终末期肝病。我们旨在评估 PBC 患者的生活质量(QoL),因为社会、经济和地理因素也会影响 QoL。

方法

本研究纳入了根据欧洲肝病研究协会指南诊断为 PBC 的患者,这些患者接受了至少 6 个月的治疗,以便有足够的时间让初始症状负担减轻。我们使用了在塞尔维亚语中经过验证的 PBC-40 问卷。

结果

PBC-40 总分的平均值为 89.4±29.3。每个领域中度和重度受累的总体频率如下:“症状”为 84.9%(n=107),“瘙痒”为 29.3%(n=36),“疲劳”为 76.4%(n=97),“认知”为 58.1%(n=72),“社会”为 77.2%(n=98),“情绪”为 70.9%(n=90)。疾病持续时间和白蛋白评分与情绪领域评分呈显著负相关。此外,该领域与 Mayo 评分呈显著正相关。

结论

本研究表明,PBC 患者的 QoL 显著受损,疲劳是最常见的症状。社会和情绪领域也受到显著影响,特别是外周水肿的患者,他们的 QoL 比容量正常的患者差。

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