Visual Universitätsmedizin Mainz

Psychosocial late effects, health behavior and aftercare of long-term childhood and adolescent cancer survivors - A registry-based longitudinal study (PSYNA)

Prinicipal investigator

Univ.-Prof. Dr. med. Dipl.-Psych. Manfred E. Beutel

Project team

Dr. phil. MSc. Psych. Mareike Ernst

Research topic

As a result of the increasing treatment success of childhood cancer, a growing number of long-term survivors reach adulthood. Thus, there is a pressing need to better understand the late effects of the disease and its treatment. The German Cancer Aid supports the four-year PSYNA project with more than 375.000€ as an add-on to the CVSS (Cardiac and Vascular Late Effects of Long-Term Survivors after Childhood and Adolescent Cancer), in which late effects are investigated in 1.000 long-term survivors from all over Germany. The CVSS study includes a comprehensive examination of cardiovascular functions, laboratory parameters, and cognitive status. PSYNA supplements these measurements by investigating psychosocial late effects, health behavior, and needs for/use of aftercare using a comprehensive questionnaire survey and in-depth, qualitative interviews in a sub-sample. The aim is to determine the long-term consequences of cancer and its treatment and to ascertain factors that influence resilience to negative long-term consequences.

Project duration: 2016 - 2020

Funding: German Cancer Aid

Recent publications

  • Ernst, M., Brähler, E., Wild, P. S., Faber, J., Merzenich, H. & Beutel, M. E. Erinnertes elterliches Erziehungsverhalten und die Bewältigung von Entwicklungsaufgaben bei Langzeitüberlebenden von Krebserkrankungen des Kindes- und Jugendalters. Familiendynamik. (im Druck)
  • Ernst, M., Brähler, E., Klein, E. M., Jünger, C., Wild, P. S., Faber, J., Schneider, A. & Beutel, M. E. (2020). What's past is prologue: Recalled parenting styles are associated with childhood cancer survivors' mental health outcomes more than 25 years after diagnosis. Social Science & Medicine, 112916. Link: https://www.sciencedirect.com/science/article/abs/pii/S0277953620301350
  • Ernst, M., Brähler, E., Wild, P.S., Jünger, C., Faber, J., Schneider, A. & Beutel, M. E. (2020). Risk factors for suicidal ideation in a large, registry-based sample of adult long-term childhood cancer survivors. Journal of Affective Disorders, 265, 351-356. Link: https://www.sciencedirect.com/science/article/abs/pii/S0165032719320610?via%3Dihub
  • Ernst, M., Brähler, E., Wild, P. S., Faber, J., Merzenich, H. & Beutel, M. E. (2020). The desire for children among adult survivors of childhood cancer: Psychometric evaluation of a cancer-specific questionnaire and relations with sociodemographic and psychological characteristics. Psycho-Oncology, 29(3). 10.1002/pon.5285 Link: https://onlinelibrary.wiley.com/doi/full/10.1002/pon.5285
  • Burghardt, J., Klein, E., Brähler, E., Ernst, M., Schneider, A., Eckerle, S., Neu, M., Wingerter, A., Henninger, N., Panova-Noeva, M., Prochaska, J. H., Wild, P. S., Beutel, M. E. & Faber, J. (2019). Prevalence of mental distress among adult survivors of childhood cancer in Germany – Compared to the general population. Cancer Medicine, 8(4). 10.1002/cam4.1936 Link: https://onlinelibrary.wiley.com/doi/full/10.1002/cam4.1936
  • Ernst, M., Brähler, E., Klein, E. M., Jünger, C., Wild, P. S., Faber, J., Schneider, A. & Beutel, M. E. (2019). Parenting in the face of serious illness: Childhood cancer survivors remember different rearing behavior than the general population. Psycho-Oncology, 28(8). 10.1002/pon.5138 Link: https://onlinelibrary.wiley.com/doi/abs/10.1002/pon.5138
  • Ernst, M., Tibubos, A.N., Unterrainer, J., Burghardt, J., Brähler, E., Wild, P. S., Jünger, C., Faber, J., Schneider, A. & Beutel, M. E.  (2019). Status and predictors of planning ability in adult long-term survivors of CNS tumors and other types of childhood cancer. Scientific Reports, 9, 7290. 10.1038/s41598-019-43874-4 Link: https://www.nature.com/articles/s41598-019-43874-4?