I Rigopoulou Eirini, Bakarozi Marianna, Dimas Ioannis, Galanis Konstantinos, Lygoura Vasiliki, K Gatselis Nikolaos, Koulentaki Mairi, N Dalekos George
Department of Medicine and Research Laboratory of Internal Medicine, National Expertise Center of Greece in Autoimmune Liver Diseases, General University Hospital of Larissa, Larissa 41110, Greece.
European Reference Network on Hepatological Diseases (ERN RARE-LIVER), General University Hospital of Larissa, Larissa 41110, Greece.
J Transl Int Med. 2023 Sep 2;11(3):246-254. doi: 10.2478/jtim-2023-0098. eCollection 2023 Sep.
Primary biliary cholangitis (PBC) has been long associated with impairment of various aspects of health-related quality of life (HRQoL) with substantial differences among populations. This study evaluated for the first-time the HRQoL in Greek PBC patients in conjunction with clinical and laboratory parameters of patients.
We analyzed prospectively collected data regarding the HRQoL by using the PBC-40 and SF-36 questionnaires in 374 Greek PBC patients and 131 age- and sex-matched non-PBC controls.
The PBC-40 questionnaire is a reliable tool for HRQoL assessment in Greek PBC patients (Cronbach's α > 0.7 for all domains). Implementation of PBC-40 and SF-36 demonstrated significant impairment of HRQoL in Greek PBC patients compared to controls ( < 0.001 for all comparisons). Emotional dysfunction, social impairment, and fatigue (100%, 80.5% and 78%, respectively) were amongst those with the highest, while cognitive dysfunction (32%) with the least impact on quality of life. Fatigue was associated with female sex ( = 0.02), longer disease duration ( = 0.01), presence of cirrhosis ( = 0.02) and positivity for PBC-specific ANA ( < 0.05), while social dysfunction with increased age ( < 0.001), longer disease duration ( < 0.001) and presence of cirrhosis ( = 0.004). Living in urban areas was linked to impaired social function ( = 0.04), cognition ( = 0.02), fatigue ( = 0.04) and increased total PBC-40 score ( = 0.01).
Implementation of PBC-40 and SF-36 revealed impaired HRQoL in Greek PBC patients with fatigue, social and emotional dysfunction exerting the highest impact. However, total, and individual PBC-40 scores were lower than that reported in studies from Northern/Central Europe and Canada. Deranged HRQoL was associated with severity of liver disease and presence of PBC-specific ANA.
原发性胆汁性胆管炎（PBC）长期以来一直与健康相关生活质量（HRQoL）的各个方面受损相关，不同人群之间存在显著差异。本研究首次结合希腊PBC患者的临床和实验室参数评估了他们的HRQoL。
我们使用PBC - 40和SF - 36问卷对374例希腊PBC患者和131例年龄及性别匹配的非PBC对照者前瞻性收集的HRQoL数据进行了分析。
PBC - 40问卷是评估希腊PBC患者HRQoL的可靠工具（所有领域的Cronbach's α>0.7）。与对照组相比，PBC - 40和SF - 36的实施表明希腊PBC患者的HRQoL有显著受损（所有比较均P<0.001）。情绪功能障碍、社交障碍和疲劳（分别为100%、80.5%和78%）对生活质量影响最大，而认知功能障碍（32%）对生活质量影响最小。疲劳与女性性别（P = 0.02）、疾病持续时间较长（P = 0.01）、肝硬化的存在（P = 0.02）以及PBC特异性抗核抗体阳性（P<0.05）相关，而社交功能障碍与年龄增加（P<0.001）、疾病持续时间较长（P<0.001）和肝硬化的存在（P = 0.004）相关。生活在城市地区与社交功能受损（P = 0.04）、认知功能受损（P = 0.02）、疲劳（P = 0.04）以及PBC - 40总分增加（P = 0.01）有关。
PBC - 40和SF - 36的实施显示希腊PBC患者的HRQoL受损，其中疲劳、社交和情绪功能障碍影响最大。然而，PBC - 40的总分和各单项得分均低于北欧/中欧和加拿大的研究报告。HRQoL紊乱与肝脏疾病的严重程度和PBC特异性抗核抗体的存在有关。
