You are invited to take part in this anonymous online survey if any of the following apply to you:
- you were diagnosed with cancer at age 65 or older and completed treatment in Luxembourg;
- you are a caregiver or family member of an adult who had cancer from the age of 65;
- or you are a healthcare professional involved in cancer treatment decision-making in Luxembourg.
The purpose of the following information on the study is to help you decide whether you would like to take part.
Given that this study involves only a single anonymous participation, the National Research Ethics Committee (CNER) has confirmed that this project is exempt from a full ethical review. However, this exemption should not be considered as an incentive to participate; participation in the survey remains entirely voluntary.
While you will not benefit directly from taking part, your contribution may help improve future research into communication and shared decision-making in cancer care.
WHAT IS THE PURPOSE OF THE STUDY?
The purpose of the TDM-Café study is to explore the perspectives of:
- adults aged 65 or older who have experienced cancer,
- their caregivers and family members, and
- healthcare professionals involved in cancer care and treatment decision-making.
The study focuses on what matters most to each group when decisions about cancer treatment are made – looking at experiences and viewpoints, not medical or clinical outcomes. The information collected will help researchers and participants co-design future research priorities on how treatment decisions are discussed and conducted for older adults with cancer.
HOW WILL THE STUDY BE CONDUCTED?
If you choose to take part in the study by clicking on the “Next” button, you will complete an anonymous online questionnaire. The questions invite you to share your views and experiences in your own words about:
- Your profile: whether your history of cancer began after the age of 65, or whether you are a caregiver, family member, or healthcare professional.
- Your perspectives on the cancer treatment decision-making process.
- What you feel future research in the area should focus on.
It will take approximately 10-15 minutes to complete this questionnaire.
Please note that you should not include any information that could identify you or someone else (such as names, dates of birth, or hospital details).
WHAT WILL HAPPEN TO MY DATA?
Your data will be used to identify research priorities for future studies on cancer treatment decision-making in older adults and to ensure existing research is implemented effectively.
Here is how your data will be handled: All collected data will be stored on a secure server at the Luxembourg Institute of Health, on a password-protected laptop.
The data will be used for:
- Identifying research priorities for future studies on cancer treatment decision-making for older adults.
- Guide the implementation of existing research.
- Writing up research articles.
- Preparing communication material for stakeholders and the public.
- Presenting at scientific events.
Please be informed that the data collected for the purpose of this study will be solely used for research purposes and will not be used for any commercial or business purposes.
CONFIDENTIALITY AND DATA PRIVACY
The questionnaire does not collect any personal or health-related data. Your responses will be anonymous from the moment you submit them and because your data are anonymous, it will not be possible to delete your responses once the questionnaire has been submitted.
Data will be stored securely on LIH’s servers and LIH will retain the anonymised data for at least 10 years after the publication of the last scientific article based on the data collected and generated from the study, in order to allow for verification, reproduction, or further exploration of the findings, thereby contributing to scientific progress. It will not be reused in future research.
WHAT ARE THE BENEFITS OF TAKING PART IN THE STUDY?
Your participation is voluntary. You will not benefit directly from taking part in this study. You will not receive financial compensation for your time spent participating. Your participation, however, is important to support the implementation of current research and help co-define the future of cancer treatment decision-making research in Luxembourg.
YOUR DECISION TO TAKE PART
You are free to withdraw at any time before submitting your answers, and you may choose not to complete the survey. Please note that once your answers are submitted, they cannot be deleted, as the data will be anonymised and cannot be connected to you.
INFORMED CONSENT FORM
- I have read and understood the information provided above.
- I understand that my participation in this study is anonymous and entirely voluntary. After submission, my answers being fully anonymised therefore cannot be modified or withdrawn, as they can no longer be linked to me in any way.
- I am aware that there will be no future reuse of my data.
By clicking the following button, you confirm that you have read and understood the information above:
There are 6 questions in this survey.
