Division of Paediatric Haematology-Oncology, Department of Paediatrics, King George's Medical University Lucknow, Uttar Pradesh, India.
Pediatr Blood Cancer. 2013 May;60(5):771-5. doi: 10.1002/pbc.24454. Epub 2013 Jan 9.
The high-cure rates of 90% in retinoblastoma are not replicated in developing countries due to late presentation and poor compliance to treatment. The present study takes a closer look at causes of abandonment of therapy and effectiveness of counselling in reducing abandonment.
A retrospective study of children with retinoblastoma registered at our centre from March 2008 through August 2011.
Fifty (49.50%) of 101 children registered for treatment abandoned therapy. Abandonment rates were significantly higher in rural as compared to urban children (P = 0.02). There was no significant difference in rate of abandonment between stages or laterality of disease and other socio-demographic factors. Telephone calls were more effective than letters in tracing patients (31.2% vs. 2.4%). Major reasons cited behind abandonment were financial problems (30%) and unwillingness to enucleate (20%). Of the 12 children who returned and were retreated 6 (50%) died of progressive disease. Nineteen (73%) of those who did not return died at home. Abandonment rates steadily declined from 71.42% in 2008 to 16.66% in 2011 (P = 0.01) due to effective pre-abandonment counselling by a support team under the National Retinoblastoma Registry of India from 2009.
Abandonment rates for children with retinoblastoma continue to be unacceptably high. Rural background, financial constraints and hesitancy to enucleate were important causes behind abandonment. Outcome of patients who abandoned treatment was uniformly dismal. Inclusion of support team and intensified initial counselling helped in improving compliance.
由于就诊较晚和治疗依从性差，发展中国家的视网膜母细胞瘤治愈率高达 90%，这一数字无法得到复制。本研究更深入地探讨了放弃治疗的原因，并研究了咨询在减少放弃治疗方面的效果。
对 2008 年 3 月至 2011 年 8 月在我们中心登记的患有视网膜母细胞瘤的儿童进行回顾性研究。
登记接受治疗的 101 名儿童中，有 50 名（49.5%）放弃了治疗。与城市儿童相比，农村儿童的放弃率明显更高（P=0.02）。疾病的分期、侧别和其他社会人口因素与放弃率无显著差异。电话追踪比信件更有效（31.2%对 2.4%）。放弃治疗的主要原因是经济问题（30%）和不愿眼球摘除（20%）。12 名返回并接受再治疗的儿童中，有 6 名（50%）因疾病进展而死亡。未返回的 19 名儿童中有 19 名（73%）在家中死亡。由于印度国家视网膜母细胞瘤登记处的支持小组从 2009 年开始进行有效的预放弃咨询，放弃率从 2008 年的 71.42%稳步下降至 2011 年的 16.66%（P=0.01）。
患有视网膜母细胞瘤的儿童的放弃率仍然高得令人无法接受。农村背景、经济限制和不愿眼球摘除是放弃治疗的重要原因。放弃治疗的患者的预后普遍较差。纳入支持小组和强化初始咨询有助于提高依从性。
