Division of Pediatric Hematology/Oncology, King Hussein Cancer Center, Amman, Jordan.
Division of Hematology/Oncology, The Hospital for Sick Children, Toronto, Ontario, Canada.
Pediatr Blood Cancer. 2021 Aug;68(8):e29054. doi: 10.1002/pbc.29054. Epub 2021 May 22.
Treatment abandonment and refusal are reported to contribute significantly to poor survival of children with cancer in low- and middle-income countries. We aimed to assess this phenomenon among children diagnosed with central nervous system (CNS) tumors in Jordan.
We retrospectively reviewed the medical charts of children <18 years diagnosed with CNS tumors (2010-2020). Patients who abandoned or refused part of treatment were reviewed for their clinical characteristics, social circumstances, and possible reasons. We excluded patients referred for second opinion, radiotherapy only, or who traveled abroad for treatment.
Four hundred seventy-three Jordanian children were identified; 12 families (2.5%) abandoned treatment, and 15 refused part of therapy (3%). Most patients were females (67%) and most had good or moderate performance status (89%). Most families (93%) lived within 2 hours from King Hussein Cancer Center. Most parents were university graduates (71%) and all fathers were employed, while 71% of mothers were housewives. The most common reasons to abandon or refuse therapy were treatment intensity in view of poor tumor outcome or bad quality of life, conflicting recommendations from other health care providers, "personal beliefs" against chemotherapy, and preference to use alternative medicine.
Treatment abandonment and refusal in Jordanian children with CNS tumors is low. Universal cancer insurance, high level of education in the country, centralized cancer care in one institution, and the twinning program likely contributed to our low incidence. Improving knowledge on CNS tumors and better community rehabilitation and supportive services may help further decrease the abandonment and treatment refusal rate.
据报道，在中低收入国家，治疗中断和拒绝治疗是导致癌症患儿生存率低的重要原因。本研究旨在评估约旦儿童中枢神经系统（CNS）肿瘤患者中存在的这一现象。
我们回顾性分析了 2010 年至 2020 年间在约旦被诊断为 CNS 肿瘤的<18 岁儿童的病历。对放弃或拒绝部分治疗的患者进行了临床特征、社会环境和可能原因的回顾。我们排除了因寻求第二意见、仅接受放疗或出国治疗而转诊的患者。
共确定了 473 例约旦儿童，其中 12 个家庭（2.5%）放弃了治疗，15 个家庭（3%）拒绝了部分治疗。大多数患者为女性（67%），大多数患者的表现状态为良好或中度（89%）。大多数家庭（93%）居住在距离侯赛因国王癌症中心 2 小时车程内。大多数父母是大学毕业生（71%），所有父亲都有工作，而 71%的母亲是家庭主妇。放弃或拒绝治疗的最常见原因是鉴于肿瘤不良结局或较差的生活质量而认为治疗强度过大、来自其他医疗机构的建议相互冲突、“个人信仰”反对化疗、以及偏好使用替代医学。
在约旦 CNS 肿瘤患儿中，治疗中断和拒绝治疗的情况很少见。全民癌症保险、国内较高的教育水平、在一家机构集中进行癌症治疗以及结对计划可能促成了我们较低的发病率。提高对 CNS 肿瘤的认识以及更好的社区康复和支持服务可能有助于进一步降低放弃治疗和拒绝治疗的比率。
