2020 年第 8 期 第 15 卷

多学科团队干预结合现代信息技术对血友病患者自我管理情况及生存质量和心理情绪的影响

Effects of multidisciplinary team intervention combined with modern information technology on self-management, quality of life and psychological emotion in hemophilia patients

作者：张艳彬陈文昆张佳李魁星

英文作者：Zhang Yanbin， Chen Wenkun， Zhang Jia Li Kuixing

单位：中国医学科学院北京协和医院血液内科，北京100730 

英文单位：Department of Hematology Peking Union Medical College Hospital Chinese Academy of Medical Sciences Beijing 100730 China 

关键词：血友病；多学科团队干预；现代信息技术；自我管理；生存质量

英文关键词：Hemophilia;Multidisciplinaryteamintervention;Moderninformationtechnology;Self-management;Qualityoflife

• 摘要：

• 目的 探讨多学科团队干预结合现代信息技术对血友病患者自我管理情况及生存质量和心理情绪的影响。方法 将2018年1—12月中国医学科学院北京协和医院收治的血友病患者84例按随机数字表法分为对照组和观察组，各42例。对照组患者在常规治疗的基础上采用常规干预联合现代信息技术进行干预，观察组患者在常规治疗的基础上采用多学科团队干预结合现代信息技术进行干预。比较 2组患者干预前及干预后的出血频率、大出血事件发生率、病情严重度、自我管理情况［自我护理能力量表（ESCA）评分］、生存质量［健康状况调查问卷（SF-36）评分］和抑郁情绪［汉密顿抑郁量表（HAMD）评分］及不良反应发生率。结果 观察组患者干预后出血频率、大出血事件发生率及病情严重度均明显低于对照组［（2.4±0.9）次/月比（3.8±1.0）次/月，t=6.231；9.5%（4/42）比26.2%（11/42），χ2=8.672；47.6%（20/42）比69.0%（29/42），χ2=9.082，均P＜0.05］。干预3个月后，观察组患者的各项ESCA评分及总分、SF-36评分均高于对照组患者，HAMD评分低于对照组（均P＜0.05）；观察组患者不良反应发生率明显低于对照组 ［4.8%（2/42）比31.0%（13/42），χ2=32.262，P＜0.001］。结论 多学科团队干预联合现代信息技术有利于提高血友病患者的生存质量和自我管理能力，改善患者的不良情绪、降低不良反应发生率。

• Objective To explore the effects of multidisciplinary team intervention combined with modern information technology on self-management status, quality of life and psychological mood in patients with hemophilia. Methods From January to December 2018, 84 patients with hemophilia admitted to Peking Union Medical College Hospital, Chinese Academy of Medical Sciences were randomly divided into control group and observation group, with 42  patients in each group. Patients in the control group were given routine intervention combined with modern information technology. Patients in the observation group were treated with multidisciplinary team intervention combined with modern information technology for intervention on the basis of conventional treatment. The frequency of bleeding, major bleeding events, disease severity, self-management status (ESCA score), quality of life (SF-36 score), depression mood (HAMD score) and incidence of adverse reactions were compared between the two groups before and after intervention. Results The frequency of bleeding, the incidence of major bleeding events and the severity of the disease in the observation group were significantly lower than those in the control group after 3 months of intervention ［(2.4±0.9)times/month vs (3.8±1.0)times/month, t=6.231; 9.5%(4/42) vs 26.2%(11/42) ，χ2= 8.672; 47.6%(20/42) vs 69.0%(29/42), χ2=9.082, all P＜0.05］. After 3 months of intervention, the ESCA score, total score, and SF-36 score in observation group were higher than those in control group; the HAMD score was lower than that in the control group (all P＜0.05). The incidence of adverse reactions in observation group was significantly lower than that in control group［4.8%（2/42） vs 31.0%（13/42）, χ2= 32.262, P＜0.001］. Conclusion Multidisciplinary team intervention combined with modern information technology contributes to improve the quality of life and self-management ability in patients with hemophilia.