Jeanette Falck Winther Consultant, MD, DMSc

1. Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
Jeanette Falck Winther
Consultant, MD, DMSc
Head of Childhood Cancer
Survivorship
Research Group
Survivorship Unit
Danish Cancer Society
Research Center
jeanette@cancer.dk
Nordic Programme on Health and Welfare Kick-
off meeting in Oslo, 22 October 2015

2. The Nordic study population, by main diagnostic group
according to the international classification scheme for
childhood cancer
Childhood cancer is
rare
245 new cases in DK
per year (0-19 yrs at
age of diagnosis)
More than 25 000
people in the Nordic
countries are
survivors of
childhood cancer ~
0.1% of the total
population

3. Treatment of childhood cancer - A success story of modern medicine
Five-year survival rates for all childhood cancers in the Nordic countries combined,
by period of diagnosis in 1943 – 2005
The overall 5-year survival rate from childhood cancer has increased from less than 40% in the pre-
chemotherapeutic area (before 1960) to more than 80% today

4. Adult Life after Childhood Cancer in Scandinavia
– A Nordic research program in late effects of cancer therapy in
children
A collaborative research program between the Nordic cancer registries, leading research institutes, and
pediatric oncology centers of the Nordic countries
33 160 childhood cancer patients (one-year survivors) and 212 892 population comparisons
Overall goal: to obtain a better understanding of the mechanisms behind treatment-induced somatic
diseases in different organ systems, which is critical for making evidence-based recommendations for
future care of long-term survivors
Supported by the Danish Strategic Research Council
www.aliccs.org

5. Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
Call announced by NordForsk in Nov 2014
‘Constructing Nordic Research Infrastructure Pilots in Health and Welfare by combining
registers with socioeconomic and health-related data’
A collaborative research program between the Finnish Cancer Registry, Karolinska Institutet
and DCRC including more than 26 000 survivors and nearly 168 000 population comparisons

6. Participating research teams
•Jeanette Falck Winther, Consultant, Head of Childhood Cancer
Survivorship (CCS) Research Group, MD, DMSc
Team leader, Project leader for Nordic research team
•Jørgen H Olsen, MD, DMSc, Director, Advisor
•Henrik Hasle, MD, PhD, Professor in Paedatric hematology and
oncology, Skejby
•Lars Hjort, MD, PhD, Consultant, Paediatric oncologist
•Anja Krøyer Kristoffersen, Data Manager
•Klaus Kaa Andersen, PhD, Statistician
•Camilla Pedersen, Postdoc
•Friederike Erdmann, Postdoc
Danish Cancer Society
Research Center
Survivorship Unit
•Maria Feychting, Professor, PhD, Head of Unit, Team leader
•Mats Talbäck, PhD, Statistician and researcher
•Hanna Mogensen, PhD student
Karolinska Institutet
Unit of Epidemiology
Institute of
Environmental Medicine
•Laura Madanat-Harjuoja, MD, PhD, Team leader
•Nea Malila, MD, PhD, Director, Advisor
•Matti Rantanen, Statistician
•TBN, PhD student
Cancer Society of
Finland
Finnish Cancer Registry

7. Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
Having a heart disease or a depression, it may be especially
difficult for young survivors of childhood cancer to get a
good education and a good job later on in life
Question to answer: What will be the socioeconomic
consequences for survivors having serious somatic diseases
or a mental disorder?
AIMS: In the largest population-based studies within this research field, we
will study
1) Hospital contacts for mental (and somatic) disease
2) socioeconomic achievements or life goals such as leaving home,
cohabitation, founding a family, education and employment attainment
3) The socioeconomic burden of childhood cancer by determining social
security benefits

8. The Nordic countries offer exceptional opportunities for
carrying out population-based research
• Civil registration systems based on unique PINs
• Existence of population-based nationwide administrative registries with
information on somatic and psychiatric hospitalization, educational attainment,
family structure, and income
• Tax funded welfare systems, which supplies education, social welfare and health
care free of charge
• The tradition of administrative registration of both health and socioeconomic
factors with strong legislation to protect the individual enables the use of grouped
data for research
• A unique platform to perform the largest population-based studies ever on
socioeconomic consequences of long-term survival after childhood cancer

9. Methods
Central population
registries
National hospital
registries
(somatic disease
burden)
26 000 one-
year
survivors
168 000
comparisons
National cancer
registries
Matched by sex, age
and country
Psychiatric in-
patient registries
(psychiatric disease
burden)
Statistics DK, F, S
(socioeconomic
burden)

10. Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
The aim is to provide the widest range of data - education
Most rough level of information:
• highest attained education
• information on completing elementary or secondary school, high-school, or attaining an
advanced graduate degree
More detailed information:
• grades from elementary school or high school
• enrollment into learning disabled programs or special-education programs

11. Strengths of Research Strategy
• Build on the already established large Nordic ALiCCS childhood cancer survivor cohort and five
as many population comparisons
• Largest population-based studies within this research field
• Studies rely on information in unique Nordic registries, which have become valuable tools for
medical research
• Because registry data are collected independently of study hypotheses, there risk of bias such a
recall, non-response, and observation will be eliminated
• We will be able to take into consideration the inter-relationship between the various health-
related and psychosocial and socioeconomic outcomes under study
• Making risk stratification not only on cancer type of these children but also on disease burden

12. Nordic added value
• A Nordic collaboration in clinical and epidemiological research is of particular
importance for studies of relatively rare diseases such as childhood cancer
• Public health care systems are similar
• The incidence rate of childhood cancer is very similar
• Easy to increase the statistical power by combining data across borders improving
the possibility of deriving accurate information on socioeconomic late effects
• This study may serve as a model for future collaboration between the Nordic
countries in other areas of medical research that utilize register data on personal
and medical data

13. Impact
• Enrich our understanding of the difficulties young survivors of childhood cancer
encounter integrating into society
• Findings can be used as the basis for development of future interventions
targeting vulnerable subgroups of survivors
• With proactive and anticipatory risk-based care, the frequency and severity of
many of these late effects can be significantly reduced
• Knowledge of such late effects is highly requested by the survivors and their
families - and of great value for the society as such