百色市重型地中海贫血患儿治疗依从性影响因素调查  

Investigation of factors influencing treatment compliance in children with severe thalassemia in Baise City

作　　者：潘廷将[1] 陆增辉[1] 覃颖颖 李希[1] 陈艳宁[1] Pan Tingjiang;Lu Zenghui;Qin Yingying;Li Xi;Chen Yanning(Youjiang Medical University for Nationalities,Baise 533000,Guangxi,China)

机构地区：[1]右江民族医学院,广西百色533000

出　　处：《右江民族医学院学报》2024年第2期215-220,共6页Journal of Youjiang Medical University for Nationalities

基　　金：广西哲学社会科学规划研究课题(21FGL035);百色市科学研究与技术开发计划课题(20223705)。

摘　　要：目的探究重型地中海贫血患儿治疗依从性的高低,分析影响地贫患儿治疗依从性的因素,为提高地贫患儿治疗依从性给出相应解决策略。方法主要采用问卷调查法和访谈法,从输血治疗依从性、去铁剂使用依从性、检查项目依从性、家长对患儿身体的关注度4个方面,对百色地区部分患儿及其家属进行调查研究。结果百色地区重型地中海贫血患儿治疗依从性不良达60.71%,其中30.36%患者未能定期接受输血治疗,生存质量较低。此外大多数患儿的检查项目依从性低于标准。家长关注患儿身体健康的态度差异大,部分家长在明确的健康指导上表现出较高依从性。单因素分析发现性别和年龄影响治疗依从性。结论本研究发现输血治疗依从性不良主要原因是经济压力和血源紧张。去铁治疗方面部分家长误认为在不输血的情况下可以停药。此外,许多家长在未察觉孩子有明显身体问题时,往往避免额外的检查以节省费用。家属对患儿的长期生活习惯关注不足。建议政府优化帮扶政策、医院加强高质量护理、患儿家庭积极配合治疗,实行综合干预以提高治疗依从性。Objective To explore the treatment compliance of children with severe thalassemia and analyze the factors affecting such treatment compliance,so as to provide corresponding strategies to enhance treatment compliance of children with thalassemia.Methods Questionnaire surveys and interviews were conducted to investigate the children with thalassemia and their families in Baise region,focusing on compliance with blood transfusion treatment,compliance with administration of iron chelation therapy,compliance with medical examinations,and parental concern with their children’s health.Results In Baise region,60.71%of children with severe thalassemia exhibited poor treatment compliance.Among them,30.36%failed to adhere to regular blood transfusions,resulting in diminished quality of life.Additionally,most patients demonstrated substandard compliance with medical examination.Significantly,parental concern for their children’s health varied,with some showing high compliance when provided with explicit health guidance.Univariate analysis revealed that gender and age influenced treatment compliance.Conclusion Financial constraints and blood supply shortages were identified as primary contributors to inadequate compliance with blood transfusion treatment.Furthermore,some parents erroneously believed that discontinuing iron chelation therapy was permissible if transfusions were halted.Additionally,many parents refrained from additional medical examinations to cut costs unless overt health issues arose in their children.Notably,family members displayed insufficient attention to their children’s long-term lifestyle habits.Recommendations include optimizing governmental support policies,enhancing hospital care quality,and fostering active participation from patients’families to improve treatment compliance.

关 键 词：地中海贫血 百色地区 治疗依从性 

分 类 号：R556.61[医药卫生—血液循环系统疾病]