Mostert Saskia, Sitaresmi Mei N, Gundy Chad M, Veerman Anjo J P
Department of Pediatrics, Vrije University Medical Center, Amsterdam, The Netherlands.
Pediatrics. 2006 Dec;118(6):e1600-6. doi: 10.1542/peds.2005-3015. Epub 2006 Oct 30.
A major reason for poor survival of childhood acute lymphoblastic leukemia in developing countries is treatment refusal or abandonment. This can be associated with parental socioeconomic status and attitudes of health care providers. Our study examined the influence of 2 socioeconomic status determinants, parental income and education, on treatment in an Indonesian academic hospital.
Medical charts of 164 patients who received a diagnosis of acute lymphoblastic leukemia between 1997 and 2002 were abstracted retrospectively. Data on treatment results and parental financial and educational background were collected. Open interviews were conducted with parents and health care providers.
Of all patients, 35% refused or abandoned treatment, 23% experienced treatment-related death, 22% had progressive or relapsed leukemia, and 20% had an overall event-free survival. Treatment results differed significantly between patients with different socioeconomic status; 47% of poor and 2% of prosperous patients refused or abandoned treatment. Although poor and prosperous patients used the same protocol, the provided treatment differed. Poor patients received less individualized attention from oncologists and less structured parental education. Strong social hierarchical structures hindered communication with doctors, resulting in a lack of parental understanding of the necessity to continue treatment. Most poor patients could not afford treatment. Access to donated chemotherapy also was inadequate. Treatment refusal or abandonment frequently resulted. There was no follow-up system to detect and contact dropouts. Health care providers were not fully aware that their own attitude and communication skills were important for ensuring compliance of patients and parents.
Children's survival of acute lymphoblastic leukemia in developing countries could improve if problems that are associated with parental financial and educational background and medical teams' attitudes to treatment and follow-up could be addressed better.
在发展中国家,儿童急性淋巴细胞白血病生存率低的一个主要原因是治疗被拒绝或放弃。这可能与父母的社会经济地位以及医疗服务提供者的态度有关。我们的研究考察了两个社会经济地位决定因素,即父母收入和教育程度,对印度尼西亚一家学术医院治疗情况的影响。
回顾性提取了1997年至2002年间被诊断为急性淋巴细胞白血病的164例患者的病历。收集了治疗结果以及父母经济和教育背景的数据。对父母和医疗服务提供者进行了开放式访谈。
在所有患者中,35%拒绝或放弃治疗,23%经历了与治疗相关的死亡,22%患有进展性或复发性白血病,20%实现了无事件总体生存。不同社会经济地位的患者治疗结果差异显著;47%的贫困患者和2%的富裕患者拒绝或放弃治疗。尽管贫困和富裕患者采用相同的治疗方案,但所提供的治疗有所不同。贫困患者从肿瘤学家那里得到的个性化关注较少,父母接受的系统性教育也较少。强大的社会等级结构阻碍了与医生的沟通,导致父母对继续治疗的必要性缺乏理解。大多数贫困患者负担不起治疗费用。获得捐赠化疗药物的途径也不足。治疗被拒绝或放弃的情况经常发生。没有后续跟踪系统来发现并联系失访患者。医疗服务提供者并未充分意识到他们自己的态度和沟通技巧对于确保患者及其父母的依从性很重要。
如果与父母经济和教育背景以及医疗团队对治疗和后续跟踪的态度相关的问题能够得到更好的解决,发展中国家儿童急性淋巴细胞白血病的生存率可能会提高。