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Rationale and background
Why study childhood cancer survivors?
Cancer in children and adolescents aged 0-19 years (referred to as childhood cancer in this webpage) is the leading cause of death by disease in this age group in developed countries. Childhood cancer is diagnosed in about 180 per million per year in the Nordic countries (Denmark, Sweden, Norway, Finland and Iceland), with highest incidence among the age groups of 0-4 years and 15-19 years.
Increased survival - increased need for care
However, advances in treatment combinations and techniques, pharmacology, as well as better tailoring of treatment and high-quality supportive care, have led to improvements in cancer treatment over the past decades, resulting in substantial survival improvements. The 5-year survival rate from childhood cancer has increased from 30% in the 1960s to more than 80% nowadays in high-income countries. The growing population of childhood cancer survivors has led to rising awareness and concerns regarding potential consequences of intensive cancer treatments or the childhood cancer experience itself that affects childhood cancer survivors in later life.
Why study potential late-effects in childhood cancer survivors?
Cancer and its treatment during childhood may result in a variety of late-effects, such as second cancers, increased morbidity and mortality of other diseases, chronic health issues, impairment of growth, reproductive difficulties and psychosocial problems.
A substantial number of previous studies have investigated somatic late-effects and found that childhood cancer survivors have an excess risk of a broad range of somatic late-effects associated with the cancer and/or its treatment in young ages, varying from higher mortality rates, increased risk of a new primary cancer, severe chronic health conditions and an overall double risk of being hospitalized for somatic diseases affecting all major organ systems.
How will the SALiCCS research program add knowledge to this field?
Whereas a large body of evidence exist on somatic late effects, less is known about the socioeconomic situation of childhood cancer survivors. We hypothesize that treatment of childhood cancer also may cause impairments that diminish social functioning such as school attendance, educational achievement, obtaining employment, as well as influences social life and the probability of founding a family.
Previous studies have indicated that childhood cancer survivors had more often scholastic problems such as repeating grades or attending special education programs, that they had a lower level of education, and were more likely to be unemployed when compared to populations without a childhood cancer history. Previous studies focusing on reproductive health showed that childhood cancer survivors were less likely to become pregnant and have fewer offspring compared to their siblings or the general population.
However, the literature lacks evidence from population-based registry-based studies with a sufficient sample size to explore a wider range of socioeconomic conditions and related determinant with reasonable accuracy. Moreover, registry-linkage with higher follow-up rates would yield more reliable estimates. Studies should consider somatic and psychiatric late-effect from which childhood cancer survivors might suffer, as well as account for parental socioeconomic position, when assessing the socioeconomic circumstances in childhood cancer survivors, as such factors are considered likely to affect the achievement of socioeconomic outcome.
To address these knowledge gaps, the unique research program entitled “Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia (SALiCCS)” was initiated in beginning of 2016.