Aim of the study:

With the ExpOnko study, we want to investigate which personal and social aspects play a role in the lives of cancer patients and their relatives. We also want to find out how these factors can be better incorporated into treatment decisions. In this way, we want to strengthen person-centred, individualised care.

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

In ExpOnko, we consider the entire care process from acute therapy to aftercare for cancer patients and include relatives on an equal footing.

We are looking for you!

• People who currently have a diagnosis of lung cancer and/or bowel cancer
• Caring relatives/contact persons of people with cancer

to participate in

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

Please contact us if you are interested!

The ExpOnko study comprises 3 phases:

1. we investigate psycho-social protective and risk factors.

Cancer not only affects the medical level, but also the social environment. It can lead to psychological stress and strongly influence the everyday lives of patients and their relatives.

Factors such as social support, stress or lifestyle have an influence on the course of cancer, the success of treatment for patients or the quality of life of relatives. We also call these factors the "psycho-social exposome". However, these factors have often not been systematically taken into account in clinical decision-making processes (e.g. when making treatment decisions).

The aim of this first phase is to systematically record psychosocial risk and protective factors such as social support, psychosocial stress, stress, lifestyle factors and care needs of people with cancer and their relatives.

We have planned the following steps:

• Patients and relatives complete 3 questionnaires (online or by post, each taking approx. 20 minutes) within 6 months. You will complete the first questionnaire immediately after giving your consent to the study, the second questionnaire after 3 months and the third questionnaire after 6 months.

• Between the first and second questionnaire, you can take part in an everyday measurement. You will receive a very short questionnaire (5 to 8 minutes each) on your smartphone three times a day.

2. we want to know how psycho-social protective and risk factors are included 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 taking psychosocial protective and risk factors into account in future discussions in tumour boards, patient consultations and therapy recommendations.

We have planned the following steps:

• We are investigating how psycho-social factors are documented in patient documentation.
• We observe decision-making processes in tumour conferences (so-called multidisciplinary tumour boards).
• We conduct focus groups (group discussions) with doctors, patients and relatives.
• We develop guidelines and training concepts.

3. we gain insights into psycho-oncological care in the Weser-Ems region.

In the third step, the psycho-oncological care landscape in the University Medicine Oldenburg catchment area will be analysed.

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

To this end, we have planned the following steps:

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

Important to know:

• Participation in all parts of the study is voluntary.
• Cancellation is possible at any time and without giving reasons.
• Your data will be treated confidentially.
  It will not be passed on to third parties (not even to your counsellors).