FAQ SCCSS

What to expect from the study?

The results shall help to improve the medical follow-up care of cured patients. Consequently, the participants benefit directly from the study.

In addition, the study examines whether state of health, quality of life and occupational and familial situation of former patients differ from patients’ siblings and from the general public. Should we discover that a specific treatment entails more complications than others it will be possible in the future to initiate preventive steps in an earlier phase of the treatment.

Why are former patients’ siblings surveyed?

With our study we want to determine the state of health of former patients and compare it with population groups that did not have cancer. An important comparison group are the siblings of patients. For this reason we ask siblings similar questions as former patients. Since siblings mostly live in the same family they usually grow up in a similar way to former patients. We are thus able to determine whether and how the state of health of former patients and their siblings in the same family differ. This approach allows us to examine whether possible differences are due to the formerly suffered disease.

Why is the questionnaire filled with so many and partly intimate questions?

It is the aim of the study to obtain a picture as complete as possible of how cured former patients feel today. Therefore, the questionnaire includes many areas such as education, social contacts, relationships and physical well-being. Of course, we fully understand if you cannot or will not answer all the questions.

The questionnaire does not cover all areas of my disease.

We are aware of the fact that we cannot cover all areas of every disease. Covering every aspect of every disease would make the questionnaire too long. A big part of our questions originates from the “Swiss Health Survey”. This allows us to compare the data of the former patients with the general public. There are certainly other areas which would be important to consider too.

It takes a lot of time to fill out the questionnaire. Why do I not get any compensation?

We want to contact as many former patients as possible. This makes the study very time-consuming and cost-intensive. We receive the money for the study from sponsors and individual donors. For these reasons we cannot pay the participants of the study. We are therefore especially thankful if you take your time to fill out our questionnaire.

Why are there questions about the parents’ education and income?

It is known from other diseases that the medical care of former patients can be influenced by social and financial conditions. We intend to find out if such a correlation exists with child cancer.

Where can I get information on the current course of the study and first results?

We provide a general view about current publications of our study at the following link: Publicationshttp://www.childhoodcancerregistry.ch/

Our newsletter and first results of the study are available at:

http://www.childhoodcancerregistry.ch/

© ISPM - University of Bern 2016