【摘要】 目的:评估酪氨酸激酶抑制剂（tyrosine kinase inhibitor, TKI）治疗的慢性粒细胞白血病（chronic myeloid leukemia, CML）儿童成年后幸存者自我报告的生活质量及其影响因素。方法:2020年9月—2021年12月在全国范围内向发病年龄<18岁、目前年龄≥18岁的CML患者发放调查问卷，方式包括电子问卷及纸质版问卷。该问卷包括3个部分：（1）受访者人口学、疾病及诊疗特征；（2）参考中国居民膳食指南2016版的生活方式调查；（3）采用EQ-5D-3L评估生活质量量表[包括健康效用值（health utility index, HUI）、视觉模拟尺度评分（visual analogue scale, VAS）]。结果:共有93例CML儿童成年后受访者符合标准并被纳入本研究。CML儿童成年后受访者生活质量下降的主要表现为疼痛/不舒服（躯体功能）和焦虑/抑郁（心理功能）。对HUI进行多因素分析显示，女性（AOR=0.130,P=0.018）、药物相关不良反应越多（AOR=0.493,P=0.008）、睡眠时间不达标（AOR=0.176,P=0.033）者，HUI得分越低。对VAS进行多因素分析显示，诊断年龄越小（B=1.636,P=0.040）、目前年龄越大（B=-2.071,P=0.007）、TKI服用时间短（B=0.167,P=0.007）、不良反应个数越多（B=-1.908,P=0.012）、运动量不达标（B=-5.895,P=0.025）、吸烟者（B=-8.624,P=0.023）,VAS得分越低。健康生活方式个数与HUI(r=0.536,P=3.14×10^-8)、VAS(r=0.391,P=1.06×10^-4)呈中度相关。结论:CML儿童成年后受访者生活质量下降的主要表现为躯体功能和心理功能。女性、TKI服用时间短、药物不良反应越多、运动量不达标、吸烟者，生活质量越差。此外，健康生活方式越多，生活质量越好。更多还原

【Abstract】 Objective: To explore the health-related quality of life（HRQoL） and associated variables in adult survivors of childhood chronic myeloid leukemia（CML） receiving tyrosine kinase inhibitors（TKI）. Methods: A cross-sectional questionnaire was given to adult survivors of childhood CML, who were<18 years at the diagnosis of CML and ≥18 years at the study. The questionnaire consisted of 3 parts: demographic information and clinical information, the lifestyle behaviors survey of the Dietary Guidelines for Chinese（2016） and the Chinese version of EQ-5D-3L as HRQoL questionnaire, which includes health utility index（HUI） and visual analogue scale（VAS）. Results: A total of 93 adults with childhood CML were included in the study. The repaired HRQoL was mainly manifested in pain/discomfort（physical functioning） and anxiety/depression（mental functioning）. Multivariate analysis of HUI showed that females（AOR=0.130, P=0.018）, with more drug-related adverse events（AOR=0.493, P=0.008）, with less sleep time（AOR=0.176, P=0.033） were associated with lower HUI score. Multivariate analysis of VAS showed that the younger children at diagnosis（B=1.636, P=0.040）, the older adults at study（B=-2.071, P=0.007）, with shorter TKI-therapy duration（B=0.167, P=0.007）, with more drug-related adverse events（B=-1.908, P=0.012）, substandard physical activity（B=-5.895, P=0.025）, smoking（B=-8.624, P=0.023） were associated with lower VAS score. The number of healthy lifestyles was moderately correlated with HUI(r=0.536, P=3.14×10^-8) and VAS(r=0.391, P=1.06×10^-4), respectively.Conclusion: Females, with younger age at diagnosis, and older age at study, the more drug-related adverse events, shorter TKI-therapy duration, less sleep time, less physical activity, and smoking, the worse HRQoL they had. In addition, the more healthy lifestyle, the higher HRQoL.更多还原