Aim of the study:

Through the ExpOnko study, we aim to investigate which personal and social factors play a role in the lives of cancer patients and their relatives. We also wish to find out how these factors can be better incorporated into decisions regarding treatment. In doing so, we aim to strengthen person-centred, individualised care.

The ExpOnko study is part of the INGVER-STAR project and is being carried out in close co-operation between Pius Hospital Oldenburg, Oldenburg University Hospital and the Department of Psychology at the University of Oldenburg.

In ExpOnko, we examine the entire care process, from acute treatment through to the aftercare of cancer patients, and involve family members on an equal footing.

We are looking for you!

• People who are currently living with cancer – regardless of the type of cancer, the stage of the disease or your current treatment situation (ongoing diagnosis, undergoing treatment, follow-up care after completing treatment, etc.)
• Family carers or contact persons for people with cancer

to take part in

• A participatory advisory board
• An online survey
• Interviews and group discussions

If you are interested, please do get in touch with us!

The ExpOnko study comprises three phases:

1. We are investigating psychosocial protective and risk factors.

A cancer diagnosis affects not only the medical aspect but also the social environment. It can lead to psychological strain and have a significant impact on the daily lives of patients and their relatives.

Factors such as social support, stress or lifestyle, for example, influence the course of a cancer diagnosis, the success of patients’ treatment or the quality of life of their relatives. We also refer to these factors asthe ‘psychosocial exposome’. However, in clinical decision-making processes (for example, when deciding on treatment), these factors have often not been systematically taken into account to date.

The aim of this first phase is the systematic identification of psychosocial risk and protective factors – such as social support, psychosocial distress, stress, lifestyle factors and care needs – among people with cancer and their relatives.

To this end, we have planned the following steps:

• Patients and their relatives will complete three questionnaires (online or by post, each taking around 20 minutes) over a period of six months. You will complete the first questionnaire immediately after giving your consent to take part in the study, the second questionnaire after three months, and the third questionnaire after six months.

• Between the first and second questionnaires, you can take part in a daily life assessment. For this, you will receive a very short questionnaire (5 to 8 minutes each) on your smartphone three times a day.

2. We would like to understand how psychosocial protective and risk factors are taken into account in treatment decisions.

In the second phase of the project, we are investigating how psychosocial factors are taken into account in clinical practice and how they can be incorporated into decision-making processes in a more structured way in future.

The aim of this second phase is to develop a strategy for systematically incorporating psychosocial protective and risk factors into discussions at tumour boards, patient consultations and treatment recommendations in future.

To this end, we have planned the following steps:

• We are examining how psychosocial factors are recorded in patient records.
• We are observing decision-making processes in tumour conferences (so-called multidisciplinary tumour boards).
• We are conducting focus groups (group discussions) with doctors, patients and their relatives.
• We are developing guidelines and training programmes.

3. We are gaining insights into psycho-oncological care in the Weser-Ems region.

In the third step, the psycho-oncological care landscape within the catchment area of University Medicine Oldenburg is being examined.

The aim of this third phase is to develop strategies to improve the integration of psycho-oncological services with the structures of University Medicine Oldenburg.

To this end, we have planned the following steps:

• We are interviewing psycho-oncologists and counsellors in the region.
• We will conduct interviews with patients and their relatives.
• We will invite psycho-oncologists and counsellors to workshops to discuss current challenges and needs together.

Important to note:

• Participation in all parts of the study is voluntary.
• You may withdraw at any time without giving a reason.
• Your data will be treated confidentially.
  It will not be passed on to third parties (not even to your healthcare providers).