Publications

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Cohort Profile: The Socioeconomic Consequences in Adult Life After Childhood Cancer in Scandinavia (SALiCCS) Research Programme
Friederike Erdmann, Line Elmerdahl Frederiksen, Hanna Mogensen, Camilla Pedersen, Luzius Mader, Mats Talbäck, Andrea Bautz, Elli Hirvonen, Anniina Kyrönlahti, Liisa Maria Korhonen, Henrik Hasle, Nea Malila, Laura-Maria Madanat-Harjuoja, Maria Feychting, Jeanette Falck Winther
Front Oncol. 2021 Nov 26;11:752948. doi: 10.3389/fonc.2021.752948. eCollection 2021.

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.

Psychiatric disorders in childhood cancer survivors in Denmark, Finland, and Sweden: a register-based cohort study from the SALiCCS research programme
Line Elmerdahl Frederiksen, Friederike Erdmann, Luzius Mader, Hanna Mogensen, Camilla Pedersen, Line Kenborg, Andrea Bautz, Mats Talbäck, Elli Hirvonen, Thomas Tjørnelund Nielsen, Elisabeth Anne Wreford Andersen, Anna Sällfors Holmqvist, Ole Sylvester Jørgensen, Jens Richardt Møllegaard Jepsen, Nea Malila, Henrik Hasle, Laura Madanat-Harjuoja, Maria Feychting, Jeanette Falck Winther
Lancet Psychiatry. 2022 Jan;9(1):35-45. doi: 10.1016/S2215-0366(21)00387-4. Epub 2021 Nov 22.

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.

Employment status and occupational positions of childhood cancer survivors from Denmark, Finland and Sweden: A Nordic register-based cohort study from the SALiCCS research programme
Line Elmerdahl Frederiksen, Camilla Pedersen, Hanna Mogensen, Luzius Mader, Andrea Bautz, Mats Talbäck, Elli Hirvonen, Filippa Nyboe Norsker, Henrik Hasle, Nea Malila, Laura Madanat-Harjuoja, Maria Feychting, Friederike Erdmann, Jeanette Falck Winther
Lancet Reg Health Eur. 2021 Nov 30;12:100258. doi: 10.1016/j.lanepe.2021.100258. eCollection 2022 Jan.

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.

Surviving childhood cancer: a systematic review of studies on risk and determinants of adverse socioeconomic outcomes
Frederiksen LE, Mader L, Feychting M, Mogensen H, Madanat-Harjuoja L, Malila N, Tolkkinen A, Hasle H, Winther JF, Erdmann F.
Int J Cancer. 2019 Apr 15;144(8):1796-1823. doi: 10.1002/ijc.31789. Epub 2018 Oct 30.
PMID: 30098012

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.

Life after Childhood Cancer in Nordic Registries – a treasure trove for research
Article by Tor Martin Nilsen
NordForsk Magazine 2018 pg. 16-18

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.

Posters

Conference 50th Congress of the International Society of Paediatric Oncology (SIOP). Kyoto (Japan). November 2018
Poster Surviving childhood cancer: a systematic review on risk and determinants of socioeconomic outcomes
Frederiksen LE, Mader L, Feychting M, Mogensen H, Madanat-Harjuoja L, Malila N, Tolkkinen A, Hasle H, Winther JF, Erdmann F

Conference 49th Congress of the International Society of Paediatric Oncology (SIOP). Washington, D.C. (USA), October 2017
Poster Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia: Rational and design of a three Nordic country-wide population-based study
Erdmann F, Mogensen H, Feychting M, Madanat-Harjuoja L, Malila N, Talbäck M, Korhonen L, Pedersen C, Tolkkinen A, Hasle H, Olsen JH, Winther JF

Conference The 17th Acta Oncologica Symposium, the European Cancer Rehabilitation & Survivorship (ECRS). Copenhagen (Denmark). September 2018
Poster Surviving childhood cancer: a systematic review on risk and determinants of socioeconomic outcomes
Frederiksen LE, Mader L, Feychting M, Mogensen H, Madanat-Harjuoja L, Malila N, Tolkkinen A, Hasle H, Winther JF, Erdmann F



Conference 15th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer. Atlanta (USA), June 2017
Poster Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia: Rational and design of a three Nordic country-wide population-based study
Erdmann F, Mogensen H, Feychting M, Madanat-Harjuoja L, Malila N, Talbäck M, Korhonen L, Pedersen C, Tolkkinen A, Hasle H, Olsen JH, Winther JF

Conference The Fifth European Symposium on Late Complications after Childhood Cancer (ESLCCC2016). Copenhagen (Denmark), September 2016
Poster Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia: Rational and design of a three Nordic country-wide population-based study
Erdmann F, Pedersen C, Feychting M, Madanat-Harjuoja L, Malila N, Talbäck M, Korhonen L, Mogensen H, Tolkkinen A, Hjorth L, Hasle H, Olsen JH, Winther JF

Conference NOPHO 2017. Stockholm (Sweden), May 2017
Poster Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia: Rational and design of a three Nordic country-wide population-based study
Mogensen H, Erdmann F, Pedersen C, Feychting M, Madanat-Harjuoja L, Malila N, Talbäck M, Korhonen L, Tolkkinen A, Hjorth L, Hasle H, Olsen JH, Winther JF

Conference NOPHO 2017, Stockholm (Sweden), May 2017
Poster Risky health behaviour related deaths in childhood cancer survivors -A population-based register study from Denmark, Finland, and Sweden (Award for best poster)
Korhonen L, Rantanen M, Bautz A, Erdmann F, Falck-Winther J, Feychting M, Mogensen H, Taskinen M, Madanat-Harjuoja LM

Presentations

Conference Internal seminar at the International Agency for Research on Cancer (IARC), Lyon (France), February 2019 (Invited oral presentation)
Presentation Socioeconomic life of childhood cancer survivors: What do we know now? And what do we need to know to understand better?
Frederiksen LE

Conference 50th Congress of the International Society of Paediatric Oncology (SIOP), Kyoto, Japan, November 2018
Presentation Risky health behavior related deaths in childhood cancer survivors – a population-based register study from Denmark, Finland and Sweden
Korhonen LM, Rantanen M, Bautz A, Erdmann F, Winther JF, Feychting M, Malila N, Mogensen H, Taskinen M, Madanat-Harjuoja L

Conference 50th Congress of the International Society of Paediatric Oncology (SIOP), Kyoto, Japan, November 2018
Presentation Income of adult survivors of childhood and adolescent cancer – Findings from the three Nordic country-wide population based SALiCCS study
Tolkkinen A, Madanat-Harjuoja L, Taskinen M, Malila N, Erdmann F, Pitkäniemi J

Conference Onkologisk Klinik Department of Oncology), Rigshospitalet, Copenhagen (Denmark), February 2018
Presentation Surviving childhood cancer: What are the risk and determinants of adverse socioeconomic outcomes? A systematic review. PhD symposium (Award for best oral presentation)
Frederiksen LE, Mader L, Winther JF, Erdmann, F

Conference Folkesundhedsdage 2018, Nyborg, Denmark (national public health conference), September 2018
Presentation Surviving childhood cancer: a systematic review on risk and determinants of socioeconomic outcomes (Award for best ph.d. presentation)
Frederiksen LE, Mader L, Feychting M, Mogensen H, Madanat-Harjuoja L, Malila N, Tolkkinen A, Hasle H, Winther JF, Erdmann F

Conference Internal seminar at the National Institutes of Health, National Cancer Institute. Bethesda (USA), October 2017 (Invited oral presentation)
Presentation Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia (SALiCCS) – A three Nordic country-wide research programme 
Erdmann, F

Conference Internal seminar at the Federal Research Centre of Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev. Moscow (Russia), February 2017 (invited oral presentation)
Presentation Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia – the SALiCCS research programme
Erdmann, F

Conference NordicEpi conference, Lund (Sweden), September 2017
Presentation Gathering, pooling and harmonizing Nordic registry data: Experience from the three Nordic country-wide research programme on Socioeconomic Consequences in Adult Life after Childhood Cancer in Scandinavia (SALiCCS)
Erdmann, F

Interviews

Frederiksen LE. International Agency for Research on Cancer. International Childhood Cancer Day 2019. Line Elmerdahl Frederiksen presents her work on the socioeconomic life of childhood cancer survivors. 

Video interview available here