In Germany, approximately 69,000 women and 700 men develop breast cancer every year. Around 30 percent of these individuals have an increased familial risk of cancer. Early knowledge of an increased familial risk offers an important opportunity because increasingly better treatment options are available with early intervention. For this to happen, those affected and actors from all sectors - from the general practitioner's office to specialized consultations - must work closely together. The goal is therefore to sustainably strengthen transsectoral care.
Within the framework of a new project, funded by the Innovation Fund at the G-BA, a paradigmatic digital care platform is being developed for people with familial cancer risk and their treating physicians.
A special feature of the project is its strong interdisciplinary nature. Scientists from the three Berlin universities involved are working together to develop best-practice solutions for digital innovations in trans-sectoral care.
The dVP_FAM is based on the previous experience of the iKNOW project, successfully developed by Dorothee Speiser, Friederike Kendel and Markus Feufel as a digital tool for improved cancer counselling.

Project duration: 12/2021 - 11/2025

Funding: Innovation Committee at the G-BA in the amount of €4.3 million

Project partners of the Berlin universities:

PD Dr. Dorothee Speiser (Gynaecology), Charité - University Medicine Berlin
Prof. Dr. Friederike Kendel (GiM), Charité - University Medicine Berlin
Prof. Dr. Markus Feufel (Occupational Science) TU Berlin
Dr. Sven Asmussen (Law) HU Berlin
Other project participants: André Sander (software development), ID Berlin GmbH; PD Dr. Simone Wesselmann (oncology), Deutsche Krebsgesellschaft e.V.; Lars Straubing (payer), BKK VBU; Dr. Konrad Neumann (biometry, Charité - Universitätsmedizin Berlin; Prof. Dr. Gertraud Stadler (GiM, Charité - Universitätsmedizin Berlin); Prof. Dr. Thomas Reinhold (Social Medicine, Charité - Universitätsmedizin Berlin); Prof. Dr. Ute Felbor (Human Genetics, University of Greifswald)
 

Genetic mutations such as BRCA mutations are becoming increasingly important in gynaecology: about 5-10% of all breast and 10-15% of all ovarian carcinomas develop due to congenital genetic mutations. Gynaecologists in private practice play a central role in the care of patients with an increased risk of developing the disease due to a family history. They carry out an initial risk assessment as part of the family history, inform patients at high risk and refer them to specialised centres for genetic counselling. In order to be able to correctly identify high-risk patients at an early stage, it is important that gynaecologists in private practice have the necessary knowledge and can apply it.

This is where the iKNOW GYNetics project comes in: The aim of the project is to develop and evaluate further training for gynaecologists in private practice. The training supports the doctors in updating their knowledge of gynaecological-genetic diseases and in gaining an understanding of the processes in the specialised centres. In addition, doctors should develop a sensitivity to the psychological burdens of a possible genetic mutation. What these particularities mean for comprehensible and empathetic communication with patients will be discussed on the basis of case studies.

iKNOW GYNetics thus contributes to early detection and adequate care of women with an increased risk of breast and ovarian cancer.

Project duration: 07/2019 - 05/2021

Funding: German Cancer Aid

Head of project: Prof. Dr. Friederike Kendel (Charité), PD Dr. Dorothee Speiser (Charité), Prof. Dr. Markus Feufel (TU Berlin)

Research assistants: Stephanie Häring, Christine Olbrich, Alina Rörig

PhD student: Karen Fechner
 

Women with genetic mutations in the BRCA1 or BRCA2 genes have a significantly increased risk of developing breast or ovarian cancer. After the genetic test result, affected women find themselves in a psychologically stressful exceptional situation in which they must simultaneously understand complex information and make serious decisions. This is where the iKNOW project comes in. The aim of the project is the development and evaluation of an online-supported counselling tool for the individual education of affected women. The counselling tool supports doctors in presenting the complicatedly determined disease probabilities in a way that is easy to understand for those affected. It also ensures that the information on how to deal with these risks can always be adapted to the current state of scientific knowledge. Via the counselling tool, affected women have access to their individual risk profile and to information on psychosocial issues at any time, even after the following consultation.  

It will be investigated whether women who are informed with the help of the new counselling tool have a better understanding of risk than women who receive conventional counselling. In addition, it will be investigated how the counselling tool changes the subjective perception of one's own risk as well as the fear of illness and the health-related quality of life and which medical services the affected women use after counselling. 

Project duration: 06/2018 - 03/2022

Funding: Innovation Committee at the G-BA

Consortium leader: Prof. Dr. Jens-Uwe Blohmer / Dr. Dorothee Speiser (Centre for Familial Breast and Ovarian Cancer, Charité).

Consortium partners: Prof. Dr. Friederike Kendel (Medical Psychology, Charité); Prof. Dr. Markus Feufel (Work Science, TU).
 

The decision for a treatment option after the diagnosis of low-risk prostate carcinoma is extremely complex: the risk of irreversible side effects and losses in quality of life associated with the decision for radical prostatectomy or radiotherapy must be weighed against the risk of not receiving timely treatment when opting for a wait-and-see strategy. The patient's mental representations of disease are of great importance in the treatment decision: these include assumptions about the causes of development, the time course and controllability. The aim of this prospective, non-interventional study is to investigate the complex interplay of mental illness representations, illness coping and illness anxiety before and after the treatment decision. Further information on the COPCa study can be found on the project website.

Project duration: 2014 - 2019

Funding: Else Kröner-Fresenius-Foundation Study Director: Prof. Dr. Friederike Kendel, Prof. Dr. Mark Schrader

In May 2013, actress Angelina Jolie made public her decision to undergo a bilateral prophylactic mastectomy due to a BRCA1 gene mutation. This news received unprecedented attention in the international media. It also led to a significant increase in demand for genetic counselling and preventive measures in Germany and is now described as the so-called "Jolie effect". For carriers of a mutation in a gene that predisposes to familial breast cancer, the risk of breast and ovarian cancer increases considerably. The psychological burden of women with a familial risk of breast cancer varies greatly and has an impact on medical decisions and the quality of life of those affected. The assessment and perception of one's own risk seems to play a major role. For the first time, a prospective, non-interventional study will investigate the relationships between risk perception, personality variables and coping strategies as well as the associated medical decisions. The results should contribute to a better understanding of the complex process of adjusting to life with an increased risk of breast and ovarian cancer and thus improve counselling and support for those affected.  

Project duration: 2016 - 2018

Funding: Berlin Cancer Society

Study management: Prof. Dr. Friederike Kendel, Dr. Dorothee Speiser

The S3 guideline for the treatment of prostate carcinoma in the low-risk category provides for three curative strategies - radical prostatectomy, radiotherapy, brachytherapy - and a wait-and-see strategy (active surveillance) as equal treatment options. The physical side effects and psychological burdens of the individual therapies can be very different. However, there are hardly any reliable data on the psychological stress and disease management over a longer course of the disease that allow a comparison of the different therapy strategies. The aim of this study was therefore to gain a differentiated picture of the psychosocial burden of patients who have been living with their disease for several years.

Project duration: 2015 - 2016

Funding: Oskar-Helene-Heim Foundation

Study management: Prof. Dr. Friederike Kendel, Dr. Silke Burkert