2009年深圳市宝安区33例地中海贫血患儿规范治疗及家庭负担情况调查

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.

Abstract：

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.

A survey on the standardized treatment of 33 cases of children thalassemia and their family economic burden in Bao'an district, Shenzhen city, 2009

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.