安徽省杜氏肌营养不良症患儿生命质量现状及影响因素分析  

Investigation of quality of life in Duchenne muscular dystrophy children in Anhui Province and analysis of influencing factors

作　　者：巫洁 陈信 毛惠芳 程进 魏锁[3] 王丽华 WU Jie;CHEN Xin;MAO Huifang;CHENG Jin;WEI Suo;WANG Lihua(Department of Pediatrics,the First Affiliated Hospital of Bengbu Medical University,Bengbu,Anhui 233004,China;不详)

机构地区：[1]蚌埠医科大学第一附属医院儿科,安徽蚌埠233004 [2]安徽卫生健康职业学院,安徽池州247099 [3]池州市疾病预防控制保健中心,安徽池州247000 [4]复旦大学附属中山医院护理部,上海200030

出　　处：《中华全科医学》2025年第4期613-617,共5页Chinese Journal of General Practice

基　　金：安徽省高等学校省级质量工程项目(2022zmgj018)。

摘　　要：目的了解安徽省杜氏进行性肌营养不良(DMD)患儿生存现状及相关影响因素,为提高该人群的生命质量及制定相关健康管理制度提供参考。方法采取一次性横断面调查方式于2023年2-8月开展问卷调查收集符合标准的安徽省DMD患儿基本信息,采用儿童生存质量量表(PedsQL)调查DMD患儿生命质量,采用多元线性回归分析探究DMD患儿生命质量得分的影响因素。结果累计回收有效问卷179份,有效回收率为90.40%。患儿平均确诊年龄为3.00(2.00,5.00)岁,误诊率为41.90%(75/179),异地就诊率达69.27%(124/179)。儿童PedsQL生存质量得分为(42.22±20.38)分。健康问卷抑郁量表(PHQ-9)显示77.65%(139/179)的主要照料者存在不同程度的抑郁倾向。多元线性回归分析显示,年龄、主要居住地、是否接受激素治疗、照料者抑郁感受均为DMD患儿生存质量得分的影响因素(P<0.05)。结论安徽省DMD患儿生命质量仍然存在较大提升空间;生命质量与患者居住地、是否接受激素治疗、照料者的抑郁感受等相关,应积极采取措施提高DMD人群生命质量,加强疾病防治科普宣教及人文关怀等。Objective To investigate the oral health-related quality of life and associated factors in children with Duchenne muscular dystrophy(DMD)in Anhui province,providing reference for improving the quality of life in this population and developing relevant health management systems.Methods A cross-sectional survey was adopted to select the children with Duchenne muscular dystrophy who met the criteria in Anhui Province from February to August 2023.The pediatric quality of life inventory measurement models(PedsQL)was used to investigate the quality of life of DMD patients,and multiple liner regression analysis was used to explore the factors influencing quality of life scores in DMD patients.Results A total of 179 valid questionnaires were collected,with an effective response rate of 90.40%.The average age at diagnosis was 3.00(2.00,5.00)years old,with a misdiagnosis rate of 41.90%(75/179)and a long-distance treatment rate of 69.27%(124/179).In addition,the PedsQL quality of life score for children was(42.22±20.38)points.The patient health questionnaire-9(PHQ-9)showed that 77.65%(139/179)of participants exhibited depressive tendencies.Multiple linear regression analysis identified age,primary place of residence,receipt of hormone therapy,and caregiver depression as significant factors influencing quality of life scores in children with DMD(P<0.05).Conclusion There is still significant potential for improving the quality of life for children with DMD in Anhui Province.The quality of life is influenced by factors such as patient's place of residence,hormone therapy,and the caregiver's feelings of depression.Proactive measures should be taken to improve the quality of life for DMD patients,strengthen education on disease prevention and management,and provide humanistic care.

关 键 词：杜氏进行性肌营养不良 现状调查 生命质量 

分 类 号：R725[医药卫生—儿科]