The SALiCCS Research Program

The Research Program

From ALiCCS to  SALiCCS

The research program is an extension of the collaborative Nordic research program Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study. The SALiCCS program combines knowledge from the initial ALiCCS research program regarding somatic disease burden, and adds information on psychiatric disease burden, socioeconomic circumstances and family factors.

For more information please visit ALiCCS

Who?

The study cohort consists of all five-year survivors of childhood cancer diagnosed under the age of 20 years with a childhood cancer in Denmark, Sweden and Finland since start of cancer registration through 2008/2009. Up to 20,000 five-year survivors as well as five times as many population comparisons will be followed. In addition to the population comparisons, siblings of the cancer survivors are used as a second comparison group.

How do we do it?

None of the Nordic countries on their own has a sufficiently large population to conduct detailed studies on socioeconomic circumstances in childhood cancer survivors with adequate power. However, when combining data from several Nordic countries, an optimal setting can be created to address important research questions in this field and allow risk stratified analyses.
Data linkage between a wide range of population-based health and administrative registries are enabled using the unique personal identification numbers (PIN numbers) of all residents in Denmark, Sweden and Finland. This enables investigation of a comprehensive range of socioeconomic conditions and family circumstances in childhood cancer survivors, while accounting for the somatic and psychiatric disease burden. The Nordic countries have largely standardized diagnostic and treatment procedures for childhood cancers, interaction and collaboration between pediatric oncologists, as well as free and uniform health care coverage and access to health care services. Furthermore, the Nordic countries have similar welfare systems in general, which makes it reasonable to combine data on childhood cancer survivors across the Nordic countries.

Objectives

The overall objective of the SALiCCS research program is to investigate socioeconomic circumstances and family factors in long-term survivors after childhood cancer within a large cross-national population-based setting, considering also the somatic and psychiatric disease burden of the survivors.

The specific aims of the SALiCCS research program is to:

• study hospital contacts for all types of mental disorders in childhood cancer survivors (Part I)
• investigate how survivors of childhood cancer manage the transition from childhood into adulthood by determining the following socioeconomic achievements and family circumstances: leaving home, cohabitation, founding a family as well as education, income and employment attainment (Part II)
• examine the socioeconomic burden of childhood cancer and treatment on survivors by determining social security benefits, such as unemployment benefits, social assistance, sickness allowance, disability pension and rehabilitation benefits (Part III)

Implication

The novel findings resulting from the research program will enrich our understanding of the difficulties survivors of childhood cancer encounter integrating into society. As the population of childhood cancer survivors is steadily growing, it is paramount with a fully understanding of the long-term consequences of cancer treatment and experiencing a cancer diagnosis in young age with focus on socioeconomic circumstances in order to improve the long-term outcomes of a childhood cancer diagnosis. 

Moreover, our findings may be the basis for future recommendations on interventions targeting vulnerable groups of survivors, to give all children affected with cancer an equal chance to a healthy continued life after childhood cancer diagnosis. Such recommendations may not only be limited to the Nordic countries with a relatively extensive welfare system but may also be applicable to other countries.

Background and Rationale

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.