Erdmann Friederike, Frederiksen Line Elmerdahl, Mogensen Hanna, Pedersen Camilla, Mader Luzius, Talbäck Mats, Bautz Andrea, Hirvonen Elli, Kyrönlahti Anniina, Korhonen Liisa Maria, Hasle Henrik, Malila Nea, Madanat-Harjuoja Laura-Maria, Feychting Maria, Winther Jeanette Falck
Childhood Cancer Research Group, Danish Cancer Society Research Center, Copenhagen, Denmark.
Division of Childhood Cancer Epidemiology, Institute of Medical Biostatistics, Epidemiology and Informatics (IMBEI), Johannes Gutenberg University Mainz, Mainz, Germany.
Front Oncol. 2021 Nov 26;11:752948. doi: 10.3389/fonc.2021.752948. eCollection 2021.
The growing number of survivors of childhood cancer, with many years of life ahead, demonstrates the increasing clinical and public health relevance of investigating the risks of social and socioeconomic impairment after a childhood cancer diagnosis and the life-saving treatment. To enrich understanding of the mental, social and socioeconomic difficulties that childhood cancer survivors may face during their life-course, identify particularly vulnerable survivors and overcome the limitations of previous research, we initiated the Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia (SALiCCS) research programme.
This Nordic cross-border research programme is a collaboration between the Danish Cancer Society, the Finnish Cancer Registry and Karolinska Institutet to investigate a broad range of mental, social and socioeconomic conditions in long-term childhood cancer survivors in Denmark, Finland and Sweden. SALiCCS is based on a registry-based matched cohort design, comprising five-year survivors of cancer diagnosed at ages 0-19 years (1971-2008 in Denmark, 1971-2009 in Finland, 1971-2011 in Sweden), age-, sex- and country-matched population comparisons and sibling comparisons who were followed over time. Outcomes of interest included mental disorders, educational achievements, employment and profession, family life and the need of social security benefits. Individual-level data linkage among various national registries provided the data for the research programme.
The SALiCCS core population comprises 21,292 five-year survivors, 103,303 population comparisons and 29,644 siblings as a second comparison group. The most common diagnoses in survivors were central nervous system tumours, leukaemias and lymphomas.
SALiCCS is the largest, most comprehensive population-based research initiative in this field, based on high-quality registry data with minimal risk of bias. The findings will be informative for evidence-based survivorship care targeting not only somatic late effects but also psychosocial impairments.
儿童癌症幸存者数量不断增加，未来还有许多年的人生，这表明研究儿童癌症诊断及挽救生命的治疗后出现社会和社会经济损害风险在临床和公共卫生方面的相关性日益增强。为了更深入了解儿童癌症幸存者在其生命历程中可能面临的心理、社会和社会经济困难，识别特别脆弱的幸存者，并克服以往研究的局限性，我们启动了斯堪的纳维亚半岛儿童癌症成年后社会经济后果（SALiCCS）研究项目。
这个北欧跨境研究项目是丹麦癌症协会、芬兰癌症登记处和卡罗林斯卡学院之间的合作项目，旨在调查丹麦、芬兰和瑞典长期儿童癌症幸存者广泛的心理、社会和社会经济状况。SALiCCS基于基于登记处的匹配队列设计，包括0至19岁确诊癌症的五年幸存者（丹麦为1971 - 2008年，芬兰为1971 - 2009年，瑞典为1971 - 2011年），按年龄、性别和国家匹配的人群对照以及随时间跟踪的兄弟姐妹对照。感兴趣的结果包括精神障碍、教育成就、就业和职业、家庭生活以及社会保障福利需求。各个国家登记处之间的个体层面数据链接为该研究项目提供了数据。
SALiCCS核心人群包括21292名五年幸存者、103303名人群对照以及29644名作为第二对照组的兄弟姐妹。幸存者中最常见的诊断是中枢神经系统肿瘤、白血病和淋巴瘤。
SALiCCS是该领域最大、最全面的基于人群的研究项目，基于高质量的登记处数据，偏差风险极小。研究结果不仅对针对躯体迟发效应而且针对心理社会损害的循证生存护理具有参考价值。
