慢性粒细胞白血病儿童成年后幸存者自我报告的生活质量及其影响因素

Self-reported health-related quality of life and associated variables in adult survivors of childhood chronic myeloid leukemia

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。

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 were18 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.