Publications

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.

Using high-quality register data from three Nordic countries, we have done the most comprehensive population-based study of psychiatric disorders among childhood cancer survivors so far. We provide the novel and important finding that survivors of childhood cancer face a long-term higher risk of psychiatric disorders than their siblings and the general population. By the age of 30 years, 16% of childhood cancer survivors, 14% of siblings and 13% in the general population had had a psychiatric hospital contact, and the elevated risk persists at 50 years of age. Our findings identify specific psychiatric disorders that survivors are at particularly higher risk of contracting than their siblings and the general population, including organic disorders, and developmental disorders and intellectual disability. To improve mental health and the overall quality of life after childhood cancer, survivorship care should include a focus on early signs of mental health problems, especially among high-risk groups of survivors.

Based on unique and high-quality register data from three Nordic countries with similar welfare and healthcare systems, this study represents the most comprehensive population-based study of employment and occupation among childhood cancer survivors to date. We provide the novel finding that adult survivors of childhood cancer have a substantial burden of health-related unemployment later in life in comparison to the general population and their siblings. By 30 years of age, 9.2% (95% CI, 8.6-9.9%) of survivors were unemployed for health reasons. Health-related unemployment was particularly pronounced among survivors of central nervous system tumours and survivors diagnosed below 15 years of age. We found no notable differences in unemployment for reasons unrelated to health, and survivors obtained similar occupational positions as comparisons.

In this systematic review we included 52 studies assessing various socioeconomic factors for childhood cancer survivors.

We found that childhood cancer survivors are at higher risk of educational difficulties, achieved a lower income level and relied more on social support from the government compared to healthy peers or siblings, whereas our findings for work life only showed higher risk of unemployment among CNS tumor survivors. Our results consistently indicated that CNS tumor survivors, those treated with radiation and children diagnosed in younger ages were at particular risk of facing adverse socioeconomic outcomes. These socioeconomic difficulties may present many years after treatment and have large implications throughout their adult life, highlighting the need for follow-up care interventions, especially for vulnerable groups of survivors, to ensure a good life after childhood cancer.

The number of cancer survivors among children and young people in the Nordic region has never been greater, but little is known about the challenges this patient group faces in the aftermath of cancer treatment. Survivors of childhood cancer may experience difficulty concentrating, fatigue or depression due to various late effects from the disease and the treatment, and also have an increased risk for a wide array of other diseases. More knowledge is needed about the impacts of childhood cancer on subsequent education, working life and family life. With the help of Nordic health registries, the NordForsk-funded SALiCCS project is taking steps to learn more.