To better understand the quality of life and needs of long-term (>5 years post-diagnosis) cancer survivors, the German Cancer Research Center initiated the CAESAR study in cooperation with selected federal cancer registries in Germany.  The study, funded by the German Cancer Aid, aimed to:

1) Better understand long-term effects of cancer and its treatments,

2) Develop approaches to prevent long-term health restrictions, and to

3) Improve the follow-up care and health of long-term cancer survivors.

Study design

The first study round was conducted in 2009/2011 on a population basis in six federal states of Germany (Schleswig-Holstein, North Rhine-Westphalia, Rhineland-Palatinate, Hamburg, Bremen and Saarland). More than 7,000 people, diagnosed with breast, colon or prostate cancer at least 5 years previously, participated in the study. Below are the publications based on this initial study. 

A follow-up study was carried out in 2018/2019. Participants of the initial survey who had given their consent to be contacted again and are alive, were eligible. More than 2,700 participants took part in the follow-up survey. In addition, attending physicians of the participants were also invited to complete a questionnaire to provide in-depth details on treatments and comorbidities. 

Publications

Thong, M. S. Y., Doege, D., Weißer, L., Koch-Gallenkamp, L., Jansen, L., Bertram, H., . . . Arndt, V. (2023). Persisting Deficits in Health-Related Quality of Life of Colorectal Cancer Survivors 14–24 Years Post-Diagnosis: A Population-Based Study. Current Oncology, 30(3), 3373-3390. https://doi.org/doi:10.3390/curroncol30030257

Doege, D., Thong, M. S. Y., Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., . . . Arndt, V. (2022). Clinical and sociodemographic determinants of disease-specific health-related quality of life in long-term breast cancer survivors. J Cancer Res Clin Oncol, 148(12), 3461-3473. https://doi.org/doi:10.1007/s00432-022-04204-w

Schneider, J., Hernandez, D., CAESAR Study Group, Schlander, M., Arndt, V. (2022). Out-of-pocket payments and loss of income among long-term breast cancer survivors in Germany: a multi-regional population-based study. J Cancer Surviv. https://doi.org/doi:10.1007/s11764-022-01293-x

Thong, M. S. Y., Doege, D., Weisser, L., Koch-Gallenkamp, L., Bertram, H., Eberle, A., . . . Arndt, V. (2022). Health and life insurance-related problems in very long-term cancer survivors in Germany: a population-based study. J Cancer Res Clin Oncol, 148(1), 155-162. https://doi.org/doi:10.1007/s00432-021-03825-x

Doege, D., Thong, M. S. Y., Weisser, L., Koch-Gallenkamp, L., Jansen, L., Bertram, H., . . . Arndt, V. (2021). Health-Related Quality of Life in Very Long-Term Cancer Survivors 14-24 Years Post-Diagnosis Compared to Population Controls: A Population-Based Study. Cancers (Basel), 13(11), 2754. https://doi.org/doi:10.3390/cancers13112754

Liu, Z., Thong, M. S. Y., Doege, D., Koch-Gallenkamp, L., Bertram, H., Eberle, A., . . . Arndt, V. (2021). Prevalence of benefit finding and posttraumatic growth in long-term cancer survivors: results from a multi-regional population-based survey in Germany. Br J Cancer, 125(6), 877-883. https://doi.org/doi:10.1038/s41416-021-01473-z

Liu, Z., Doege, D., Thong, M. S. Y., Koch-Gallenkamp, L., Bertram, H., Eberle, A., . . . Arndt, V. (2021). Distress mediates the relationship between cognitive appraisal of medical care and benefit finding/posttraumatic growth in long-term cancer survivors. Cancer, 127(19), 3680-3690. https://doi.org/doi:10.1002/cncr.33684

Adam, S., Doege, D., Koch-Gallenkamp, L., Thong, M. S. Y., Bertram, H., Eberle, A., . . . Arndt, V. (2020). Age-specific health-related quality of life in disease-free long-term prostate cancer survivors versus male population controls-results from a population-based study. Support Care Cancer, 28(6), 2875-2885. https://doi.org/doi:10.1007/s00520-019-05120-5

Doege, D., Thong, M. S. Y., Koch-Gallenkamp, L., Jansen, L., Bertram, H., Eberle, A., . . . Arndt, V. (2020). Age-specific prevalence and determinants of depression in long-term breast cancer survivors compared to female population controls. Cancer Med, 9(22), 8713-8721. https://doi.org/doi:10.1002/cam4.3476

Adam, S., Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., Pritzkuleit, R., . . . Arndt, V. (2019). Health-related quality of life in long-term survivors with localised prostate cancer by therapy-Results from a population-based study. Eur J Cancer Care (Engl), 28(5), e13076. https://doi.org/doi:10.1111/ecc.13076

Arndt, V., Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., Pritzkuleit, R., . . . Brenner, H. (2019). Return to work after cancer. A multi-regional population-based study from Germany. Acta Oncol, 58(5), 811-818. https://doi.org/doi:10.1080/0284186X.2018.1557341

Doege, D., Thong, M., Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., . . . Arndt, V. (2019). The role of psychosocial resources for long-term breast, colorectal, and prostate cancer survivors: prevalence and associations with health-related quality of life. Support Care Cancer, 27(1), 275-286. https://doi.org/doi:10.1007/s00520-018-4317-8

Doege, D., Thong, M. S., Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., . . . Arndt, V. (2019). Health-related quality of life in long-term disease-free breast cancer survivors versus female population controls in Germany. Breast Cancer Res Treat, 175(2), 499-510. https://doi.org/doi:10.1007/s10549-019-05188-x

Thong, M. S. Y., Doege, D., Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., . . . Arndt, V. (2019). Age at Diagnosis and Sex Are Associated With Long-term Deficits in Disease-Specific Health-Related Quality of Life of Survivors of Colon and Rectal Cancer: A Population-Based Study. Dis Colon Rectum, 62(11), 1294-1304. https://doi.org/doi:10.1097/DCR.0000000000001489

Thong, M. S. Y., Koch-Gallenkamp, L., Jansen, L., Bertram, H., Eberle, A., Holleczek, B., . . . Arndt, V. (2019). Age-specific health-related quality of life in long-term and very long-term colorectal cancer survivors versus population controls - a population-based study. Acta Oncol, 58(5), 801-810. https://doi.org/doi:10.1080/0284186X.2018.1557340

Thong, M. S. Y., Wolschon, E. M., Koch-Gallenkamp, L., Waldmann, A., Waldeyer-Sauerland, M., Pritzkuleit, R., . . . Arndt, V. (2018). "Still a Cancer Patient"-Associations of Cancer Identity With Patient-Reported Outcomes and Health Care Use Among Cancer Survivors. JNCI Cancer Spectr, 2(2), pky031. https://doi.org/doi:10.1093/jncics/pky031

Arndt, V., Koch-Gallenkamp, L., Jansen, L., Bertram, H., Eberle, A., Holleczek, B., . . . Brenner, H. (2017). Quality of life in long-term and very long-term cancer survivors versus population controls in Germany. Acta Oncol, 56(2), 190-197. https://doi.org/doi:10.1080/0284186X.2016.1266089

Koch-Gallenkamp, L., Bertram, H., Eberle, A., Holleczek, B., Schmid-Hopfner, S., Waldmann, A., . . . Arndt, V. (2016). Fear of recurrence in long-term cancer survivors-Do cancer type, sex, time since diagnosis, and social support matter? Health Psychol, 35(12), 1329-1333. https://doi.org/doi:10.1037/hea0000374

Zeissig, S. R., Singer, S., Koch, L., Zeeb, H., Merbach, M., Bertram, H., . . . Arndt, V. (2015). Utilisation of psychosocial and informational services in immigrant and non-immigrant German cancer survivors. Psychooncology, 24(8), 919-925. https://doi.org/doi:10.1002/pon.3742

Zeissig, S. R., Singer, S., Koch, L., Blettner, M., & Arndt, V. (2015). Inanspruchnahme psychoonkologischer Versorgung im Krankenhaus und in Krebsberatungsstellen durch Brust-, Darm- und Prostatakrebsüberlebende. [Utilisation of Psycho-oncological Services in Hospitals and Outpatient Counselling Centres by Survivors of Breast, Colon and Prostate Cancer]. Psychother Psychosom Med Psychol, 65(5), 177-182. https://doi.org/doi:10.1055/s-0034-1395627

Koch, L., Bertram, H., Eberle, A., Holleczek, B., Schmid-Hopfner, S., Waldmann, A., . . . Arndt, V. (2014). Fear of recurrence in long-term breast cancer survivors-still an issue. Results on prevalence, determinants, and the association with quality of life and depression from the cancer survivorship--a multi-regional population-based study. Psychooncology, 23(5), 547-554. https://doi.org/doi:10.1002/pon.3452

Koch, L., Bertram, H., Eberle, A., Holleczek, B., Schmid-Höpfner, S., Waldmann, A., . . . Arndt, V. (2013). Lebensqualität von Langzeitüberlebenden nach Brust-, Darm- und Prostatakrebs. Forum, 28(1), 43-47. https://doi.org/doi:10.1007/s12312-012-0907-4

Koch, L., Jansen, L., Brenner, H., & Arndt, V. (2013). Fear of recurrence and disease progression in long-term (>/= 5 years) cancer survivors--a systematic review of quantitative studies. Psychooncology, 22(1), 1-11. https://doi.org/doi:10.1002/pon.3022

Koch, L., Jansen, L., Herrmann, A., Stegmaier, C., Holleczek, B., Singer, S., . . . Arndt, V. (2013). Quality of life in long-term breast cancer survivors - a 10-year longitudinal population-based study. Acta Oncol, 52(6), 1119-1128. https://doi.org/doi:10.3109/0284186X.2013.774461

Jansen, L., Herrmann, A., Stegmaier, C., Singer, S., Brenner, H., & Arndt, V. (2011). Health-related quality of life during the 10 years after diagnosis of colorectal cancer: a population-based study. J Clin Oncol, 29(24), 3263-3269. https://doi.org/doi:10.1200/JCO.2010.31.4013

Project leading

PD Dr. med. Volker Arndt,
Prof. Dr. med. Hermann Brenner
Deutsches Krebsforschungszentrum
Abteilung Klinische Epidemiologie und Alternsforschung
Im Neuenheimer Feld 581
69120 Heidelberg

Contact

CAESAR-Studie
Deutsches Krebsforschungszentrum
Abteilung Klinische Epidemiologie und Alternsforschung
Im Neuenheimer Feld 581
69120 Heidelberg
Tel. 06221-421337

Germany

Dr. Daniela Doege

Tel. 06221-422331

Email: https://www.dkfz.de/de/cancer-survivorship/kontakt/Doege.php