摘要目的 探讨原发性胆汁性胆管炎(PBC)患者健康相关生活质量指标PBC-40评分,及其与临床表现的相关性.方法 收集65例PBC患者PBC-40问卷及临床资料,根据治疗情况分为初治组和复诊组,在复诊组中根据治疗反应分为难治组和稳定组,应用独立样本t检验和Pearson相关性分析,探究各组间PBC-40差异及PBC-40与临床指标相关性.结果 65例患者PBC-40量表中症状(15.8±4.1)分,瘙痒(4.9±2.8)分,乏力(23.8±8.9)分,认知功能(11.4±4.7)分,社会功能(17.0±7.5)分,情绪(6.5±3.1)分.与复诊组相比,初治组患者情绪评分较高(t=2.024,P=0.049);与稳定组相比,难治组认知功能(t=2.126,P=0.039)、社会功能(t=2.309,P=0.025)及情绪(t=2.062,P=0.045)3个维度评分增高差异有统计学意义.在相关性分析中,瘙痒与总胆红素(TBil) (r=0.349)、直接胆红素(DBil)(r=0.345)、ALP (r=0.324)、总胆汁酸(TBA)(r=0.427)(P＜0.01)之间,社会功能与TBil(r=0.361)、DBil(r=0.383)、AST(r=0.316)、TBA (r=0.331)之间,情绪与ALT(r =0.332)、TBil(r =0.426)、DBil(r =0.430)、γ-谷氨酰转肽酶(GGT)(r=0.265)、ALP(r=0.326)、AST(r=0.297)、TBA(r=0.353)之间呈正相关(P＜0.05).结论 PBC-40可用作PBC患者的健康相关生活质量评估,在中国人群中,瘙痒、社会功能和情绪维度与临床活动指标的相关性较好,高胆红素、ALP、TBA可预示低健康相关生活质量.

abstractsObjective To investigate the health related quality of life score [primary biliary cholangitis (PBC)-40] in patients with PBC,and the relationship between PBC-40 and clinical presentations.Methods The PBC-40 score and clinical presentations in PBC patients (n=65) were adapted in this study.Patients were divided into the untreated group and the treated group,and the treated group was further divided into ursodesoxycholic acid (UDCA) response group and UDCA non-response group.PBC-40 scores of different groups were analyzed by t-test and the relationship between PBC-40 and clinical presentations were analyzed with Pearson's test.Results Dimensions of PBC-40 scores of this group of patients were as follows:symptoms were (15.8±4.1) points,itch was (4.9±2.8) points,atigue was (23.8±8.9) points,cognitive dysfunction score was (11.4±4.7) points,social activity score was (17.0±7.5) points,and the emotion score was (6.5±3.1) points.The untreated group had higher emotion scores than the treated group (t=2.024,P=0.045).Compared with the UDCA response group,UDCA non-response group had higher scores in cognitive,social and emotion dimension (t =2.126,2.309,2.062,respectively,P=0.039,0.025,0.045,respectively).Itch score was significantly correlated with total bilirubin (TBil),direct bilirubin (DBil),alkaline phosphatase (ALP) and total bile acid (TBA) (r=0.349,0.345,0.324,0.427,respectively,P＜0.01),while the social scores were correlated with TBil,DBil,aspartate aminotransferase (AST) and TBA (r=0.361,0.383,0.316,0.331,P＜0.01) and emotion scores were associated with ALT,TBil,GGT,ALP,AST and TBA (r=0.332,0.430,0.265,0.326,0.297,0.353,P＜0.05).ConclusionPBC-40 can be used as a health-related quality of life assessment for PBC patients inChinese population.Itch,social and emotion dimensions are correlated with clinical activity indicators.Hyperbilirubin,ALP and TBA can predict low health quality of life in PBC patients.Conclusion PBC-40 can be used as a health-related quality of life assessment for PBC patients in Chinese population.Itch,social and emotion dimensions are correlated with clinical activity indicators.Hyperbilirubin,ALP and TBA can predict low health related quality of life in PBC patients.