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Abstract：
UNASSIGNED: Although retinoblastoma (Rb) is considered to have a good prognosis, economical stress is still a huge problem for patients\' families. Besides, doctors, the government, and social foundation staff do not precisely know how much is truly required for complete Rb therapy, especially the non-medical costs and indirect costs. This study was conducted to estimate the economic burden of Rb patients.
UNASSIGNED: This was a retrospective study. Fifty Rb patients were finally enrolled in the study. The questionnaire survey was conducted with surviving Rb patient\' main family caregivers to collect the information on costs during illness through the phone. Costs included direct and indirect cost; direct costs included medical and non-medical costs. Medical costs include drug costs, surgery costs, treatment fees, lab tests, non-lab tests costs, and medical consumptive stuff costs (including hospital expenses and outpatient fees).
UNASSIGNED: The total direct cost was $27,814.62 ± 15,137.73, and the average medical cost was $15,034.48 ± 8,224.19 ($3,963.99-36,826.53). The total non-medical expenses averaged $12,252.93 ± 9,872.64 ($728.86-48,104.95). The average reduced working time was 11.50 ± 8.06 months, and the average lost income was $13,512.23 ± 11,545.83. Among the non-medical expenses, the average non-medical expenses for children in Beijing and surrounding areas was $6,557.68 ± 6,385.42, and the average non-medical expenses for children in other provinces and was $14,502.29 ± 10,484.86, t-test p-value = 0.011. The average transportation cost for children in Beijing and surrounding areas (Hebei, Tianjin) was $1,871.09 ± 1,428.91, other provinces was $4,909.62 ± 3,697.02. Of children in Beijing and surrounding areas the average accommodation fee was $2,788.42 ± 3,065.00, in other provinces it was $6,599.27 ± 3,065.00.
UNASSIGNED: Children with Rb have a heavy economic burden. Direct non-medical expenses are higher. Getting medical treatment nearby can help reduce the economic burden of the disease. Besides, work-related issues are also a major financial problem for families with Rb, and the government should properly provide economic subsidies. Simplifying the national health insurance process and purchasing commercial supplementary medical insurance will increase the family\'s ability to afford the cost of cancer treatment.
UNASSIGNED: This was a retrospective study. Fifty Rb patients were finally enrolled in the study. The questionnaire survey was conducted with surviving Rb patient\' main family caregivers to collect the information on costs during illness through the phone. Costs included direct and indirect cost; direct costs included medical and non-medical costs. Medical costs include drug costs, surgery costs, treatment fees, lab tests, non-lab tests costs, and medical consumptive stuff costs (including hospital expenses and outpatient fees).
UNASSIGNED: The total direct cost was $27,814.62 ± 15,137.73, and the average medical cost was $15,034.48 ± 8,224.19 ($3,963.99-36,826.53). The total non-medical expenses averaged $12,252.93 ± 9,872.64 ($728.86-48,104.95). The average reduced working time was 11.50 ± 8.06 months, and the average lost income was $13,512.23 ± 11,545.83. Among the non-medical expenses, the average non-medical expenses for children in Beijing and surrounding areas was $6,557.68 ± 6,385.42, and the average non-medical expenses for children in other provinces and was $14,502.29 ± 10,484.86, t-test p-value = 0.011. The average transportation cost for children in Beijing and surrounding areas (Hebei, Tianjin) was $1,871.09 ± 1,428.91, other provinces was $4,909.62 ± 3,697.02. Of children in Beijing and surrounding areas the average accommodation fee was $2,788.42 ± 3,065.00, in other provinces it was $6,599.27 ± 3,065.00.
UNASSIGNED: Children with Rb have a heavy economic burden. Direct non-medical expenses are higher. Getting medical treatment nearby can help reduce the economic burden of the disease. Besides, work-related issues are also a major financial problem for families with Rb, and the government should properly provide economic subsidies. Simplifying the national health insurance process and purchasing commercial supplementary medical insurance will increase the family\'s ability to afford the cost of cancer treatment.
摘要：
■尽管视网膜母细胞瘤（Rb）被认为具有良好的预后，经济压力对于患者家庭来说仍然是一个巨大的问题。此外,医生,政府,和社会基金会工作人员并不确切地知道完整的Rb治疗真正需要多少，特别是非医疗费用和间接成本。本研究旨在评估Rb患者的经济负担。
■这是一项回顾性研究。50名Rb患者最终被纳入研究。问卷调查是对幸存的Rb患者的主要家庭护理人员进行的，目的是通过电话收集患病期间的费用信息。成本包括直接成本和间接成本；直接成本包括医疗和非医疗成本。医疗费用包括药费，手术费用,治疗费,实验室测试,非实验室测试费用，和医疗消耗性用品费用(包括住院费和门诊费)。
■总直接费用为$27,814.62±15,137.73，平均医疗费用为$15,034.48±8,224.19（$3,963.99-36,826.53）。非医疗总费用平均为$12,252.93±9,872.64（$728.86-48,104.95）。平均减少工作时间为11.50±8.06个月，平均损失收入为13,512.23±11,545.83美元。在非医疗费用中，北京及周边地区儿童平均非医疗费用为6,557.68±6,385.42美元,其他省份儿童平均非医疗费用为14,502.29±10,484.86美元,t检验p值=0.011。北京及周边地区儿童平均交通费用(河北，天津）为1,871.09±1,428.91元，其他省份为4,909.62±3,697.02元。北京及周边地区儿童的平均住宿费为2,788.42±3,065.00美元，其他省份为6,599.27±3,065.00美元。
■患有Rb的儿童有沉重的经济负担。直接非医疗费用较高。就近就医有助于减轻疾病的经济负担。此外,与工作有关的问题对于有Rb的家庭来说也是一个主要的经济问题，政府应该适当提供经济补贴。简化国民健康保险流程和购买商业补充医疗保险将增加家庭负担癌症治疗费用的能力。
■这是一项回顾性研究。50名Rb患者最终被纳入研究。问卷调查是对幸存的Rb患者的主要家庭护理人员进行的，目的是通过电话收集患病期间的费用信息。成本包括直接成本和间接成本；直接成本包括医疗和非医疗成本。医疗费用包括药费，手术费用,治疗费,实验室测试,非实验室测试费用，和医疗消耗性用品费用(包括住院费和门诊费)。
■总直接费用为$27,814.62±15,137.73，平均医疗费用为$15,034.48±8,224.19（$3,963.99-36,826.53）。非医疗总费用平均为$12,252.93±9,872.64（$728.86-48,104.95）。平均减少工作时间为11.50±8.06个月，平均损失收入为13,512.23±11,545.83美元。在非医疗费用中，北京及周边地区儿童平均非医疗费用为6,557.68±6,385.42美元,其他省份儿童平均非医疗费用为14,502.29±10,484.86美元,t检验p值=0.011。北京及周边地区儿童平均交通费用(河北，天津）为1,871.09±1,428.91元，其他省份为4,909.62±3,697.02元。北京及周边地区儿童的平均住宿费为2,788.42±3,065.00美元，其他省份为6,599.27±3,065.00美元。
■患有Rb的儿童有沉重的经济负担。直接非医疗费用较高。就近就医有助于减轻疾病的经济负担。此外,与工作有关的问题对于有Rb的家庭来说也是一个主要的经济问题，政府应该适当提供经济补贴。简化国民健康保险流程和购买商业补充医疗保险将增加家庭负担癌症治疗费用的能力。
