CAJ | 학술논문

目的了解深圳市宝安区登记在册的地中海贫血(简称地贫)患儿规范治疗及家庭经济负担情况,为政府制订卫生政策提供依据.方法 2009年,以电话访谈的方式对登记在册的39例地贫患儿家庭进行初步调查,预约并入户问卷调查收集33例患儿治疗及家庭经济状况.结果 33例地贫患儿中,21例(63.7%)中重度贫血;5例(15.1%)需要照顾或特殊照顾;25例(75.8%)勉强或无法维持规范治疗.家庭月均收入为(4060±2002)元,月均支出为(4926±2991)元,月均治疗支出为(2665±1872)元;家庭平均借债总额为(64 600±53 940)元.当家庭收入不足时(25例),15例(60.0%)患儿家庭会减少患儿输血或排铁次数.结论地贫患儿家庭经济负担沉重,造成患儿规范治疗不足或中断,影响其生存和生活质量,应给予足够的重视和社会关怀.
목적 료해심수시보안구등기재책적지중해빈혈(간칭지빈)환인규범치료급가정경제부담정황,위정부제정위생정책제공의거.방법 2009년,이전화방담적방식대등기재책적39례지빈환인가정진행초보조사,예약병입호문권조사수집33례환인치료급가정경제상황.결과 33례지빈환인중,21례(63.7%)중중도빈혈;5례(15.1%)수요조고혹특수조고;25례(75.8%)면강혹무법유지규범치료.가정월균수입위(4060±2002)원,월균지출위(4926±2991)원,월균치료지출위(2665±1872)원;가정평균차채총액위(64 600±53 940)원.당가정수입불족시(25례),15례(60.0%)환인가정회감소환인수혈혹배철차수.결론 지빈환인가정경제부담침중,조성환인규범치료불족혹중단,영향기생존화생활질량,응급여족구적중시화사회관부.
Objective To investigate the standardized treatment of 33 children with thalassemia and their family financial burden registered in Bao'an district, Shenzhen city, and to provide basic information for formulating health policy for the government. Methods In 2009, preliminary investigations on 39 registered families with thalassemia children were conducted by telephone, and a household survey was made to collect treatment and economic status by questionnaire on 33 children. Results Among 33 cases of thalassemia children, 21 cases(63.7%) were severe anemia, 5 cases( 15.1%) in need of care or special care, and 25 cases(75.8%) were difficult or unable to maintain standardized treatment. The average family monthly income and expenditure was (4060 ± 2002) and (4926 ± 2991) yuan, respectively. The average monthly treatment costs were (2665 ± 1872) yuan, and the average debt amounted to (64 600 ± 53 940) yuan. Fifteen families[60.0%(15/25)] would reduce the times of blood transfusions or iron transpirations when they encountered revenue deficiency. Conclusions The heavy economic burdens on families with children thalassemia result in inadequate or interrupted treatment on sick children and affect their survival and quality of life, which should be taken more attention and social care.