Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
Jeanette Falck Winther...
The Nordic study population, by main diagnostic group
according to the international classification scheme for
childhood c...
Treatment of childhood cancer - A success story of modern medicine
Five-year survival rates for all childhood cancers in t...
Adult Life after Childhood Cancer in Scandinavia
– A Nordic research program in late effects of cancer therapy in
children...
Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
Call announced by Nord...
Participating research teams
•Jeanette Falck Winther, Consultant, Head of Childhood Cancer
Survivorship (CCS) Research Gro...
Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
Having a heart disease...
The Nordic countries offer exceptional opportunities for
carrying out population-based research
• Civil registration syste...
Methods
Central population
registries
National hospital
registries
(somatic disease
burden)
26 000 one-
year
survivors
168...
Adult Life after Childhood Cancer in Scandinavia
– Socioeconomic consequences of long term survival
The aim is to provide ...
Strengths of Research Strategy
• Build on the already established large Nordic ALiCCS childhood cancer survivor cohort and...
Nordic added value
• A Nordic collaboration in clinical and epidemiological research is of particular
importance for studi...
Impact
• Enrich our understanding of the difficulties young survivors of childhood cancer
encounter integrating into socie...
Upcoming SlideShare
Loading in …5
×

Adult Life after Childhood Cancer in Scandinavia – Socioeconomic consequences of long term survival

126 views

Published on

Jeanette Falck Winther
Consultant, MD, DMSc

Published in: Science
  • Be the first to comment

  • Be the first to like this

Adult Life after Childhood Cancer in Scandinavia – Socioeconomic consequences of long term survival

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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

×