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Cure is not enough! Why it is time to act and close the gap

Survivors speaking up

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Summary

Purpose

Good news: Survival rates in childhood cancer have increased from 20% up to over 80% in Europe, depending on cancer type and country. Not so good news: This great success comes with the price that up to 60 to 70% of childhood cancer survivors suffer from cancer- and treatment-related long-term effects that need life-long follow-up care. Bad news: transition from paediatric health care to adult health care still poses a great problem for childhood cancer survivors due to the lack of adequate long-term care structures for adult survivors of childhood cancer.

Patients and methods

Ongoing initiatives and projects driven forward jointly by survivors, parents and health care professionals tackle this gap: Childhood Cancer International Europe (CCI-E) and its Survivors Network (CCI-ESN), the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer (PanCare) and the European Society for Paediatric Oncology (SIOP Europe) are working on and advocating for better long-term follow-up care structures across Europe.

Results

Three ongoing best practice projects are presented—each reflecting one important element in the delivery and provision of comprehensive long-term follow-up care: The PanCareFollowUp Project, the Survivorship-Passport and the ZONE-project.

Conclusion

The Childhood Cancer International Europe Survivors Network call for action: We need the support of politicians and our health care systems to make sure that every single survivor gets the long-term care that they need. So #RaiseYourHands4Survivors and help us close the gap!

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Notes

  1. ZONE is the German acronym for the project “Centre for oncological follow-up of adult Survivors (of childhood cancer)”.

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Authors and Affiliations

  1. Österreichische Kinder-Krebs-Hilfe (ÖKKH), Borschkegasse 1/7, 1090, Vienna, Austria

    Carina Schneider

  2. Vereniging Ouders, Kinderen en Kanker (VOKK), Schouwstede 2b, 3431 JB, Nieuwegein, The Netherlands

    Jaap den Hartogh

  3. Kinderkrebs Schweiz (KKS), Dornacherstrasse 154, CH-4053, Basel, Switzerland

    Zuzana Tomášiková

  4. Österreichische Kinder-Krebs-Hilfe (ÖKKH), Borschkegasse 1/7, A-1090, Vienna, Austria

    Anita Kienesberger

Authors
  1. Carina Schneider
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  2. Jaap den Hartogh
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  3. Katharina Feckter
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  4. Zuzana Tomášiková
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  5. Anita Kienesberger
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Consortia

CCI Europe Survivors Network

CCI Europe

Corresponding author

Correspondence to Carina Schneider.

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Conflict of interest

C. Schneider, J. den Hartogh, K. Feckter, Z. Tomášiková, and A. Kienesberger declare that they have no competing interests.

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Schneider, C., den Hartogh, J., Feckter, K. et al. Cure is not enough! Why it is time to act and close the gap. memo 12, 265–268 (2019). https://doi.org/10.1007/s12254-019-0508-3

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  • DOI: https://doi.org/10.1007/s12254-019-0508-3

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