Department of Behavioural Medicine, Institute of Basic Medical Sciences, Faculty of Medicine, University of Oslo, P.B. 1111, 0317, Oslo, Norway.
National Resource Centre for Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, Oslo, Norway.
Support Care Cancer. 2021 Jun;29(6):2947-2957. doi: 10.1007/s00520-020-05790-6. Epub 2020 Oct 3.
The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS.
Survivors were identified by the Cancer Registry of Norway. All > 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0-18 years old, excluding CNS), breast cancer (BC, stages I-III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19-39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors.
Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey (p = 0.001), higher education (p = 0.012), and increasing number of late effects (p = < 0.001) were associated with increased likelihood of follow-up care in the multivariate model.
The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.
大多数儿童、青少年和青年癌症幸存者（CAYACS）有发生晚期效应的风险，但他们可能没有接受这些晚期效应的长期随访护理。在这里，我们调查了（1）自我报告的晚期效应，（2）长期随访护理，以及（3）在挪威基于人群的长期 CAYACS 样本中接受随访护理的相关因素。
通过挪威癌症登记处确定幸存者。所有在 1985 年至 2009 年间诊断为儿童癌症（CCS，0-18 岁，不包括中枢神经系统）、乳腺癌（BC，I-III 期）、结直肠癌（CRC）、白血病（LEUK）、非霍奇金淋巴瘤（NHL）或恶性黑色素瘤（MM），年龄在 19-39 岁的患者，均通过邮寄问卷（NOR-CAYACS 研究）进行调查。采用描述性统计和逻辑回归模型分析晚期效应的发生、针对这些晚期效应的长期随访护理以及相关因素。
在 2104 名回复的幸存者中，有 1889 名符合分析条件。其中，68%为女性，平均调查年龄为 43 岁，平均诊断后 17 年，诊断为 CCS（31%）、BC（26%）、CRC（8%）、NHL（12%）、LEUK（7%）和 MM（16%）。总体而言，61.5%的人报告至少有一种晚期效应，最常见的是注意力/记忆力问题（28.1%）和疲劳（25.2%）。69%的人报告没有接受过专门针对晚期效应的长期随访护理。多变量模型中，调查时年龄较小（p = 0.001）、受教育程度较高（p = 0.012）和晚期效应数量增加（p = <0.001）与接受随访护理的可能性增加相关。
大多数幸存者报告至少有一种晚期效应，但没有接受针对这些效应的专门随访护理。这表明需要建立长期随访的结构化模式，以确保获得足够的护理。
