Study of Cancer Patients' Preferences for Genetic Information Modalities Preceding Theranostic Exome Analysis.
This study, called INFOGene, is looking at how cancer patients prefer to receive information about genetic tests that can help guide their cancer treatment. It's connected to a larger study, EXOMA2, which uses advanced genetic testing to help manage cancer. The main goal of INFOGene is to understand how doctors and patients talk about these tests and to find the best ways to explain complex genetic information so that patients fully understand it. Researchers will observe doctor-patient conversations and interview patients to learn what works best, aiming to improve how genetic information is shared in the future.
At a glance
What is this study about?
Imagine you have cancer and your doctor suggests a special genetic test called 'exome analysis' to help figure out the best treatment for you. This test looks at many of your genes to find clues about your cancer. The INFOGene study wants to make sure that when doctors talk to patients about these important tests, patients get and understand all the information clearly. It's part of a bigger project, called EXOMA2, which uses this advanced genetic testing to help treat cancer.
The main idea behind INFOGene is to find the best ways for doctors and patients to communicate about these genetic tests. Researchers will observe real conversations between doctors and patients to see how information is shared. They will also talk to patients directly to hear what they understood and what kinds of information they found most helpful. Think of it like this: if you were getting important news, would you prefer a written handout, a video, a long chat with your doctor, or a combination? This study wants to find out what works best for patients.
By understanding what patients prefer and what helps them understand complex genetic information, the study hopes to create better ways for doctors to explain these tests in the future. This could mean developing new booklets, online resources, or different ways for doctors to talk about the results, all with the aim of helping patients feel more informed and prepared when making decisions about their treatment.
Key takeaways
- The study explores how cancer patients prefer to receive genetic information.
- It aims to improve doctor-patient communication around genetic testing for cancer.
- Participation involves observation of consultations and a follow-up interview.
- It helps develop better ways to explain complex genetic test results.
- Your medical treatment will not be affected by taking part.
Who may be eligible?
To take part in this study, you must be an adult cancer patient (18 years or older) who has been identified as suitable for the EXOMA2 genetic testing study. It's important that you are able to understand and receive different types of information, and that you can speak fluent French, as the study is being conducted in France.
You should not have had a genetic counselling appointment for cancer before. Also, you need to understand what the INFOGene study is about and give your written agreement that you don't object to taking part. You also need to be comfortable with your conversations with doctors and interviews being audio recorded.
There are a few reasons why you might not be able to join. For example, if you have a mental health condition, learning difficulty, or a brain disorder that would make it hard to participate. Also, if you work in the field of genetics yourself, you wouldn't be able to take part.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Are you a cancer patient being considered for the EXOMA2 genetic test?
- Can you speak and understand French fluently?
- Have you not had a cancer genetic counselling appointment before?
- Are you comfortable with conversations being audio recorded?
- Do you not have any significant psychiatric, cognitive, or neurological conditions?
What does participation involve?
If you decide to take part in this study, your involvement will be in two main parts. First, researchers will observe some of your consultations with your doctor where they discuss the genetic test. This means they'll be there to watch and listen to how the information is shared, and they might audio record these conversations.
Secondly, a researcher will have a chat with you (a 'semi-structured interview') within 10 days of your doctor's appointment. This chat is to understand how well you understood the information your doctor gave you and what kind of information you found most useful. This interview will also be audio recorded. The study aims to look at how doctors talk about genetic tests and what helps patients understand, without directly changing your medical treatment.
Potential risks and benefits
Locations (2)
- Centre Georges-François LeclercVerified postcodeDijon, France· Recruiting
- CHU François MitterandVerified postcodeDijon, France· Recruiting
Common questions
What is 'exome analysis'?
It's a special genetic test that looks deeply into your genes to find clues that might help your doctors choose the best cancer treatment for you.
Why is this study important?
It aims to make sure patients understand complex genetic information clearly, helping doctors share details about tests and treatments in the best way possible.
Will my medical treatment change if I join?
No, this study is about communication, not changing your treatment. Your medical care will continue as planned.
Do I have to speak French?
Yes, as the study is taking place in France, participants need to be fluent in French to take part.
Can I stop participating if I change my mind?
Yes, you can withdraw from the study at any time, and it won't affect your medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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