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Mortality and second primary cancers after cancer in childhood and adolescence

English title Mortality and second primary cancers after cancer in childhood and adolescence
Applicant Kühni Claudia
Number 141775
Funding scheme ProDoc
Research institution Institut für Sozial- und Präventivmedizin Universität Bern
Institution of higher education University of Berne - BE
Main discipline Cancer
Start/End 01.08.2012 - 31.03.2016
Approved amount 198'981.00
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All Disciplines (4)

Discipline
Cancer
Medical Statistics
Paediatrics
Methods of Epidemiology and Preventive Medicine

Keywords (7)

adolescent; cohort study; second malignancies; childhood cancer; mortality; epidemiology; survivor

Lay Summary (English)

Lead
Lay summary

Background: Cancer is the second most important cause of death in childhood. With improving therapy, overall survival of childhood cancer increased dramatically and 5-year survival rates now exceed 80%. However, as a consequence of the cancer and its therapy, two thirds of survivors develop chronic conditions and many die long after cancer has been cured. In the first 10 years after diagnosis the main cause of death is recurrence of the original cancer, but thereafter deaths from second cancers predominate. It is therefore important to identify avoidable risk factors for these late consequences.

In Switzerland we have the Swiss Childhood Cancer Registry (SCCR, a national registry for cancer in childhood and adolescence) which includes long-term follow-up for all patients. We therefore have the unique opportunity to study mortality and second cancers in an unbiased representative population.

Aims: This project will focus on long-term outcomes of childhood and adolescent cancer in Switzerland. In particular, it aims to analyse how frequent late death and second cancers are among cancer survivors and the risk factors for these outcomes.

Methods: Study population: The PhD student working in this project will analyse the dataset of the SCCR, which registers since 1976 all children and adolescents diagnosed with cancer in Switzerland before age 21 years. It contains data on cancer diagnosis, treatment and mortality for 6442 children (aged 0-15 years) and 1544 adolescents (aged 16-21 years at diagnosis). Of these, 1653 children and 338 adolescents have died (251 and 66 respectively more than 5 years after diagnosis). Available data: For all participants, current address, live status and date and cause of death are available. Second cancers are currently being assessed. Information on socio-economic status is available for most participants. Work steps: The PhD student will: (i) participate in the on-going data collection, validation and cleaning; (ii) evaluate frequency of late death and second cancers; (iii) determine risk factors for mortality and second cancers.

Significance: This project will provide the first data on long-term mortality and second cancers after childhood cancer in Switzerland. It provides a unique opportunity to study long-term outcomes of childhood and adolescent cancer in a national setting with international collaboration. The identification of avoidable causes for second cancers and early deaths will allow adapting treatment in new patients, such that in the future children and adolescents with cancer can be cured with minimal long-term side effects.

Direct link to Lay Summary Last update: 21.02.2013

Responsible applicant and co-applicants

Employees

Publications

Publication
Childhood cancer survival in Switzerland (1976-2013): Time-trends and predictors.
Schindler Matthias, Belle Fabiën N, Grotzer Michael A, von der Weid Nicolas X, Kuehni Claudia E, Kuehni Claudia E (2017), Childhood cancer survival in Switzerland (1976-2013): Time-trends and predictors., in International journal of cancer, 140(1), 62-74.
Income in Adult Survivors of Childhood Cancer
Wengenroth Laura, Sommer Grit, Schindler Matthias, Spycher Ben, von der Weid Nicolas, Stutz-Grunder Eveline, Michel Gisela, Kuehni Claudia (2016), Income in Adult Survivors of Childhood Cancer, in PLOS One, 11(5), :e0155546.
Childhood cancer survivor cohorts in Europe
Winther JF, Kenborg L, Byrne J, Hjorth L, Kaatsch P, Kremer LC, Kuehni CE, Auquier P, Michel G, de Vathaire F, Haupt R, Skinner R, Madanat-Harjuoja LM, Tryggvadottir L, Wesenberg F, Reulen RC, Grabow D, Ronckers CM, van Dulmen-den Broeder E, van den Heuvel-Eibrink MM, Schindler M, Berbis J, Holmqvist AS, Gudmundsdottir T, de Fine Licht S (2015), Childhood cancer survivor cohorts in Europe, in acta oncologica, 655.
Death certificate notifications in the Swiss Childhood Cancer Registry: assessing completeness and registration procedures
Schindler Matthias (2015), Death certificate notifications in the Swiss Childhood Cancer Registry: assessing completeness and registration procedures, in Swiss Medical Weekly, 145.
Cause-Specific Long-Term Mortality in Survivors of Childhood Cancer in Switzerland: A Population Based Study
Schindler M, Spycher BD, Ammann RA, Ansari M, Michel G, Kuehni CE, Cause-Specific Long-Term Mortality in Survivors of Childhood Cancer in Switzerland: A Population Based Study, in International Journal of Cancer, Epub ahead.

Collaboration

Group / person Country
Types of collaboration
PanCare SurFup Sweden (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure
Swiss Paediatric Oncology Group (SPOG) Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure
Swiss National Cohort Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Swiss Public Health Conference 2015 Talk given at a conference Cause-specific late-mortality in 5-year survivors of childhood cancer in Switzerland - a population based study 17.09.2015 Genf, Switzerland Schindler Matthias; Kühni Claudia; Michel Gisela;
NCIN Cancer Outcomes Conference 2015 Talk given at a conference Time trends and factors associated with childhood cancer survival in Switzerland: a population based cohort study 06.06.2015 Belfast, Great Britain and Northern Ireland Schindler Matthias;
NCIN Cancer Outcomes Conference 2015 Poster Cause-specific Late Mortality Among Survivors Of Childhood Cancer in Switzerland: a Population Based Cohort Study 06.06.2015 Belfast, Great Britain and Northern Ireland Schindler Matthias;
ENCR Scientific Meeting and General Assembly Talk given at a conference Cause-specific late mortality among survivors of childhood cancer in Switzerland: a population-based study 12.11.2014 Ispra, Italy Kühni Claudia; Schindler Matthias;
ENCR Scientific Meeting and General Assembly Poster Death certificate notifications in the Swiss Childhood Cancer Registry: validation of registration procedures and completeness 12.11.2014 Ispra, Italy Kühni Claudia; Michel Gisela;
ENCR Scientific Meeting and General Assembly Poster Survival from childhood cancer in Switzerland during 1979-2008: a population-based study 12.11.2014 Ispra, Italy Michel Gisela; Schindler Matthias; Kühni Claudia;
Swiss Public Health Conference Poster Time Trends and Predictors of Childhood Cancer Survival in Switzerland 21.08.2014 Olten, Switzerland Schindler Matthias; Kühni Claudia;
Swiss Paediatric Oncology Group Annual Meeting Talk given at a conference Workdays lost for care giving by parents of children with cancer 01.02.2014 Lugano, Switzerland Schindler Matthias; Kühni Claudia;
Schindler M, Michel G, Rueegg CS, Ammann RA, Spycher BD, Kuehni CE, Late Mortality in the Swiss Childhood Cancer Survivor Cohort. 13th international conference on long-term complications of treatment of children and adolescents for cancer Poster Late Mortality in the Swiss Childhood Cancer Survivor Cohort 13.06.2013 Memphis, United States of America Kühni Claudia; Schindler Matthias; Michel Gisela;
13th international conference on long-term complications of treatment of children and adolescents for cancer Poster Combining Routine Data, Patient Records and Questionnaires: the Swiss Childhood Cancer Cohort 13.06.2013 Memphis, United States of America Schindler Matthias; Michel Gisela; Kühni Claudia;
Swiss Paediatric Oncology Group Annual Meeting Talk given at a conference Characteristics of children who died from cancer without being registered in the SCCR. 02.02.2013 Lugano, Switzerland Schindler Matthias; Kühni Claudia; Michel Gisela;


Communication with the public

Communication Title Media Place Year
Print (books, brochures, leaflets) Krebs in der Schweiz (Kapitel 5 zu Kindern) German-speaking Switzerland 2014
Print (books, brochures, leaflets) Leben nach Krebs in Kindheit oder Jugend: Forschungsschwerpunkt des Schweizer Kinderkrebsregister German-speaking Switzerland 2014
Print (books, brochures, leaflets) Pflege- und Betreuungsaufwand für Eltern von Kinder und Jugendlichen mit Krebs – Ein Faktenblatt Western Switzerland Rhaeto-Romanic Switzerland Italian-speaking Switzerland German-speaking Switzerland 2014

Awards

Title Year
SSPH+ PhD Abstract Awards - First Prize for the abstract "Cause-specific late-mortality in 5-year survivors of childhood cancer in Switzerland – a population based study" (2015) 2015
SSPH+ PhD Abstract Awards - Frist Prize for the abstract "Time Trends and Predictors of Childhood Cancer Survival in Switzerland" 2014

Associated projects

Number Title Start Funding scheme
137192 SSPH+ PhD Program Public Health 2011-2014 01.10.2011 ProDoc

Abstract

Background: Cancer is the second most important cause of death in childhood. With improving therapy, overall survival of childhood cancer increased dramatically and 5-year survival rates now exceed 80%. However, as a consequence of the cancer and its therapy, two thirds of survivors develop chronic conditions and all-cause mortality is several times higher than in the general population. In the first 10 years after diagnosis the main cause of death is recurrence of the primary cancer, but thereafter deaths from second primary cancers predominate. This underlines the need to identify avoidable risk factors for these late consequences. The existence of a national registry for cancer in childhood and adolescence (Swiss Childhood Cancer Registry, SCCR) with on-going long-term follow-up provides a unique opportunity to study mortality and second primary cancers in an unbiased representative population.Aims: This PhD project will focus on long-term outcomes of childhood and adolescent cancer in Switzerland. In particular, it aims to analyse incidence and risk factors for: (i) total and cause-specific mortality, including late mortality (>5 years after diagnosis of cancer) and (ii) second primary cancers.Methods: Study population: The student will analyse the dataset of the SCCR, which registers since 1976 all children and adolescents diagnosed with cancer in Switzerland before age 21 years. It contains data on cancer diagnosis, treatment and mortality for 6442 children (aged 0-15 years) and 1544 adolescents (aged 16-21 years at diagnosis). Of these, 1653 children and 338 adolescents have died (251 and 66 respectively more than 5 years after diagnosis). Available data: For all participants, current address, live status and date of death has been assessed via community registries. Cause of death has been obtained via linkage with the Swiss mortality statistics. Incidence of second primary cancers is currently being assessed via four independent approaches: a) direct notification from treatment centres to the SCCR; b) data linkage with cantonal cancer registries; c) mortality records (for participants deceased because of a second primary cancer) and d) a questionnaire survey among all survivors (the Swiss Childhood Cancer Survivor Study). Patient-reported secondary cancers from the questionnaire will be validated with medical records. Information on socio-economic status is available for most participants via data linkage with the Swiss National Cohort. Work steps: The PhD student will: (i) participate in the on-going data collection, data validation and cleaning of the cohort dataset; (ii) calculate standardised mortality ratios, standardized cancer incidence ratios and absolute excess risks of death and second primary cancer in the study population compared to expected numbers in the general population; (iii) determine risk factors for total and late mortality and for second primary cancers using multivariable Cox models. This study will have 80% and higher power to detect risk factors associated with a hazard ratio of at least 1.5 for late mortality.Research environment: The student will participate in the PhD training of the University of Bern and the Swiss School of Public Health (SSPH+). The project will be performed in close collaboration with the Swiss Paediatric Oncology Group and is embedded in on-going research, particularly the Swiss Childhood Cancer Survivor Study and PanCareSurFup, a EU-FP7-funded international project on long-term outcomes of childhood cancer. Significance: This project will provide the first data on long-term mortality and second primary cancers after childhood cancer in Switzerland. It provides a unique opportunity to study long-term outcomes of childhood and adolescent cancer in a national setting with international collaboration, maximising statistical power and generalisability of results. The identification of avoidable causes for second primary cancers and premature deaths will allow adapting treatment in new patients, aiming at maximal cure rates with minimal long-term side effects.
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