青少年重型地中海贫血患者过渡期准备现状及影响因素研究OA
Status and influencing factors of transition preparation in adolescents with thalassemia major
目的 了解青少年重型地中海贫血(thalassemia major,TM)患者过渡期准备的现状,明确其过渡期准备的影响因素,为青少年TM患者过渡期干预提供可靠的依据.方法 采取便利抽样法,选取2024年4月—12月在桂西地区2所三级甲等医院住院的138例青少年TM患者作为研究对象,采用一般资料问卷、过渡期准备问卷、儿童生活质量普适性核心量表、家庭照护测量量表进行多因素回归分析.结果 138例青少年TM患者过渡期准备平均总得分为(59±9)分、家庭照护得分为(189±23)分、生活质量得分为(57±14)分.年龄、病程、家庭月收入、是否接触过过渡相关信息、照顾者文化程度、家庭照护水平和生活质量水平是青少年TM患者过渡期准备的影响因素(P<0.05).结论 青少年TM患者过渡期准备处于中等水平.护理人员应根据不同患者年龄、家庭照护能力,采取针对性的家庭干预措施,以促进患者对过渡进程的准备,提高患者的生活质量.
Objective To describe the current status of transition preparation among adolescents with thalassemia major(TM),identify its influencing factors,and provide a basis for transition-period interventions.Methods A convenience sampling approach was used to recruit 138 adolescent inpatients with TM from two tertiary Grade A hospitals in western Guangxi from April to December 2024.Data were collected using a general information questionnaire,a transition preparation questionnaire,the Pediatric Quality of Life Inventory Generic Core Scales,and the Family Caregiving Measurement Scale.Multivariable regression analysis was conducted to determine factors associated with transition preparation.Results Among the 138 adolescents with TM,the mean total transition preparation score was 59±9,the family caregiving score was 189±23,and the quality of life score was 57±14.Age,disease duration,monthly family income,exposure to transition-related information,caregiver education level,family caregiving level,and quality of life level were significantly associated with transition preparation(P<0.05).Conclusions Transition preparation among adolescents with TM is at a moderate level.Nursing staff should tailor family-focused interventions according to patient age and family caregiving capacity to promote transition preparation and improve quality of life.
黄秀萍;陈玉科;刘月;王杉;罗艳妮;舒秋芬
右江民族医学院附属医院儿内科,广西 百色 533000右江民族医学院附属医院护理部,广西 百色 533000右江民族医学院研究生学院,广西 百色 533000右江民族医学院研究生学院,广西 百色 533000右江民族医学院附属医院儿内科,广西 百色 533000右江民族医学院研究生学院,广西 百色 533000
重型地中海贫血过渡期准备生活质量家庭照护青少年
Thalassemia majorTransition preparationQuality of lifeFamily careAdolescent
《中国当代儿科杂志》 2026 (5)
586-592,7
广西医疗卫生适宜技术项目(S2025087,S2023114)广西壮族自治区临床重点专科(儿科护理)建设项目右医附院中青年骨干项目(Y20212616).
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