PMID- 33000977 OWN - NLM STAT- MEDLINE DCOM- 20210929 LR - 20220421 IS - 1941-837X (Electronic) IS - 1369-6998 (Linking) VI - 23 IP - 12 DP - 2020 Dec TI - Economic burden for retinoblastoma patients in China. PG - 1553-1557 LID - 10.1080/13696998.2020.1831518 [doi] AB - BACKGROUND: 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. METHODS: 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). RESULTS: 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. CONCLUSION: 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. FAU - Zhou, Yuchen AU - Zhou Y AD - Hematology Oncology Center, Beijing Children's Hospital, Capital Medical University, National center for children's health, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics, Ministry of Education, MOE Key Laboratory of Major Diseases in Children, Beijing, China. FAU - Cai, Siyu AU - Cai S AD - Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Children's Hospital, Capital Medical University, National center for children's health, Key Laboratory of Major Diseases in Children, Ministry of Education, Beijing, China. FAU - Jin, Mei AU - Jin M AD - Hematology Oncology Center, Beijing Children's Hospital, Capital Medical University, National center for children's health, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics, Ministry of Education, MOE Key Laboratory of Major Diseases in Children, Beijing, China. FAU - Jiang, Chiyi AU - Jiang C AD - Hematology Oncology Center, Beijing Children's Hospital, Capital Medical University, National center for children's health, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics, Ministry of Education, MOE Key Laboratory of Major Diseases in Children, Beijing, China. FAU - Xu, Na AU - Xu N FAU - Duan, Chao AU - Duan C AD - Hematology Oncology Center, Beijing Children's Hospital, Capital Medical University, National center for children's health, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics, Ministry of Education, MOE Key Laboratory of Major Diseases in Children, Beijing, China. FAU - Peng, Xiaoxia AU - Peng X AD - Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Children's Hospital, Capital Medical University, National center for children's health, Key Laboratory of Major Diseases in Children, Ministry of Education, Beijing, China. FAU - Zhao, Junyang AU - Zhao J AD - Ophthalmology Department, Beijing Children's Hospital, Capital Medical University, National center for children's health, Beijing, China. FAU - Ma, Xiaoli AU - Ma X AUID- ORCID: 0000-0001-7930-4944 AD - Hematology Oncology Center, Beijing Children's Hospital, Capital Medical University, National center for children's health, Beijing Key Laboratory of Pediatric Hematology Oncology, National Key Discipline of Pediatrics, Ministry of Education, MOE Key Laboratory of Major Diseases in Children, Beijing, China. LA - eng PT - Journal Article DEP - 20201027 PL - England TA - J Med Econ JT - Journal of medical economics JID - 9892255 SB - IM MH - Child MH - China MH - Cost of Illness MH - Humans MH - *Retinal Neoplasms/therapy MH - *Retinoblastoma/therapy MH - Retrospective Studies OTO - NOTNLM OT - A10 OT - China OT - H00 OT - Retinoblastoma OT - Y90 OT - children OT - economic burden OT - medical economics EDAT- 2020/10/02 06:00 MHDA- 2021/09/30 06:00 CRDT- 2020/10/01 12:12 PHST- 2020/10/02 06:00 [pubmed] PHST- 2021/09/30 06:00 [medline] PHST- 2020/10/01 12:12 [entrez] AID - 10.1080/13696998.2020.1831518 [doi] PST - ppublish SO - J Med Econ. 2020 Dec;23(12):1553-1557. doi: 10.1080/13696998.2020.1831518. Epub 2020 Oct 27.