Mental health in patients with rare soft-tissue tumors
Thank you for your interest in the survey. Before you decide whether or not to participate, it
is important for you to understand why this research is being done, what your participation will
involve, and what risks and benefits may be associated with your participation.
What is this survey about?
The purpose of this survey is to learn about the experiences and challenges of individuals
with rare soft-tissue tumors ranging from benign tumors (e.g. lipoma), intermediate (locally
aggressive/semi-malignant) tumors (e.g. desmoid fibromatosis) to malignant tumors/sarcoma
(e.g. GIST). In doing so, we focus on a variety of mental health-related aspects. You can
participate at any time and we estimate that the online survey will take about 20-30 minutes
for you to complete. The survey will not ask for personal contact information in order to protect
your privacy.
Who can participate?
You are eligible if you are at least 18 years old and have sufficient English skills. Any nationalities and
genders are accepted.
Please make sure that you fit into one of the following categories.
- Patients who have/had any kind of benign soft-tissue tumor such as lipomas
- Patients who have/had any kind of intermediate (locally aggressive/semi-malignant)
soft-tissue tumor such as desmoid fibromatosis
- Patients who have/had any kind of soft-tissue sarcoma (malignant) such as GIST
Important: Please do not participate if you were diagnosed with any other tumor or both a malignant and benign/intermediate tumor. Moreover, please do not participate if you were diagnosed with a mental health-related diagnosis prior to the oncological diagnosis.
What are the risks and benefits?
The survey data will help to gather a better understanding of the mental health of patients
with these rare oncological diseases and help amplify diverse and marginalized perspectives
in rare disease advocacy and research. Therefore your support is greatly appreciated and
beneficial for you and fellow patients.
Please do not hesitate to take a break or view the listed resources if you feel emotionally
overwhelmed by the questions. You can keep the browser tab open and proceed at a later
time.
For resources see:
Confidentiality
Your participation in this study will be kept confidential to the extent allowed by law. You have
the right to withdraw without any consequences. On the following page we ask you to generate and
remember an individual code which can be linked to your submitted data in case you request
the deletion at a later point in time. Deletion will be possible until the end of data analysis after
which all data will be completely anonymous.
By using the generated code, the analysis will be conducted pseudonymized at the
Department of Clinical Psychology of the University of Duesseldorf (Germany). The code will
only be accessible to you and the research team and enables linking your personal data to
the study-related data in case you request a deletion. In order to anonymize study-related
data, all personal data will be deleted after the analysis. Given the current state of technology,
it will no longer be possible to link the data to your person. Study data will be stored on the
servers of SoSci Survey GmbH, permanently saved on electronic storage media (256-bit-AES-encryption) of the Department of Clinical Psychology and protected with a password.
Your data will only be accessed by the responsible and authorized researchers who are
bound to professional discretion. Once the survey is fully conducted, data will be analyzed so
that the final results and conclusions can be published in international research journals. Any
identifying information will not be included in reports or publications resulting from this study.
Voluntary Participation
Your participation in this study is completely voluntary and you have the right to withdraw
without providing any reasons. There will be no negative consequences if you choose not to
participate or if you decide to withdraw from the study at a later point in time.
For further questions please do not hesitate to reach out to:
Prof. Dr. Susanne Becker
Heinrich-Heine-University Duesseldorf
Institute of Experimental Psychology
Department of Clinical Psychology
sbecker@uni.duesseldorf.de
Jennifer Schuffelen (M.Sc.)
Heinrich-Heine-University Duesseldorf
Institute of Experimental Psychology
Department of Clinical Psychology
jennifer.schuffelen@hhu.de
Ariana Mehdizadeh (B.Sc.)
Heinrich-Heine-University Duesseldorf
Institute of Experimental Psychology
Department of Clinical Psychology
Ariana.Mehdizadeh@hhu.de