Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Institute of Primary and Community Care, Lucerne, Switzerland.
Pediatr Blood Cancer. 2019 Jun;66(6):e27661. doi: 10.1002/pbc.27661. Epub 2019 Feb 7.
Uncertainty about cure puts childhood cancer survivors at risk of mental distress. We asked survivors if they had been told they had been cured and investigated associated factors.
We used nationwide registry data and a questionnaire survey for ≥five-year survivors of childhood cancer (n = 301), followed by online focus groups with a purposive sample of Swiss pediatric oncologists (n = 17). Discussions were coded by investigators using thematic analysis.
Overall, 235 among 301 survivors (78%; 95% confidence interval, 73%-83%) reported having been told they were cured. The proportion was 89% (81%-97%) among lymphoma and 84% (77%-91%) among leukemia survivors, but only 49% (33%-65%) among central nervous system tumor survivors. Pediatric oncologists acknowledged that telling survivors they are cured may reassure them that their cancer lies behind them. However, many refrained from telling all patients. Reasons included the possibility of late effects (cure disrupted by a continued need for follow-up care) or late relapse (uncertainty of biological cure), case-by-case strategies (use of "cure" according to individual factors), and reluctance (substitution of noncommittal terms for "cure"; waiting for the patient to raise the topic).
Not all physicians tell survivors they have been cured; their choices depend on the cancer type and risk of late effects.
对治愈的不确定性使儿童癌症幸存者面临精神困扰的风险。我们询问了幸存者是否被告知已治愈，并调查了相关因素。
我们使用全国性登记数据和问卷调查了≥5 年的儿童癌症幸存者（n=301），随后对瑞士儿科肿瘤医生进行了有针对性的在线焦点小组（n=17）。调查人员使用主题分析对讨论进行了编码。
总体而言，301 名幸存者中有 235 名（78%；95%置信区间，73%-83%）报告被告知已治愈。淋巴瘤幸存者的比例为 89%（81%-97%），白血病幸存者的比例为 84%（77%-91%），但中枢神经系统肿瘤幸存者的比例仅为 49%（33%-65%）。儿科肿瘤医生承认，告诉幸存者他们已经治愈可能会让他们相信自己的癌症已经过去。然而，许多医生没有告诉所有患者。原因包括可能出现晚期效应（治愈因持续需要随访而中断）或晚期复发（生物学治愈的不确定性）、个案策略（根据个体因素使用“治愈”）以及不愿（用不明确的术语代替“治愈”；等待患者提出这个话题）。
并非所有医生都告诉幸存者他们已治愈；他们的选择取决于癌症类型和晚期效应的风险。
