Quality of life after surgery and other options to prevent cancer of the lining of the womb (endometrial cancer)
Lynch syndrome is an inherited genetic condition that significantly increases a woman's risk of womb cancer (also called endometrial cancer). To prevent cancer, doctors often discuss an operation to remove the womb, known as a risk-reducing hysterectomy. The PRESCORES study, led by Queen Mary University of London, aims to find out how having or considering this surgery affects a woman's everyday quality of life. Researchers will use these insights to see whether offering preventive surgery could also help other women who have a moderately raised risk of womb cancer. Taking part is quick and straightforward. Women aged 18 and older living in the UK with Lynch syndrome can complete a single 10- to 15-minute questionnaire, either online or on paper. The results will help doctors offer better, clearer cancer prevention choices in the NHS.
At a glance
What is this study about?
Lynch syndrome is an inherited condition that runs in families. Women with Lynch syndrome have a much higher chance of developing cancer of the lining of the womb (endometrial cancer). To protect against this, doctors often recommend surgery to remove the womb, cervix, and sometimes the ovaries. This preventative operation is known as a risk-reducing hysterectomy.
While surgery can successfully prevent womb cancer, it is a major procedure that can bring physical, emotional, and lifestyle changes. At the moment, doctors know the surgery is very useful for women at highest risk, such as those with Lynch syndrome. However, they do not yet know whether women with lower or moderate cancer risks would also benefit from having this operation.
To answer this question, researchers need to understand how having or thinking about a hysterectomy truly affects everyday quality of life. The PRESCORES study collects real-life experiences from women with Lynch syndrome to see how surgery impacts their wellbeing and peace of mind. Researchers will use this data to create mathematical models that show at what level of cancer risk preventive surgery becomes helpful, safe, and cost-effective for the NHS.
Key takeaways
- The study explores how preventive womb surgery affects daily life and wellbeing in women with Lynch syndrome.
- Participation involves filling out a single 10- to 15-minute survey either online or by post.
- There are no hospital visits, blood tests, or medications involved.
- Open to women in the UK aged 18 and older with a confirmed genetic diagnosis of Lynch syndrome.
- Your answers will help researchers understand who might benefit from preventive cancer surgery in the future.
Who may be eligible?
This study is open to women aged 18 and over who live in the UK and have a confirmed diagnosis of Lynch syndrome. This means a genetic test has found an alteration in one of the genes linked to Lynch syndrome, such as MLH1, MSH2, MSH6, PMS2, or EPCAM.
You can take part whether you have already had surgery to remove your womb, are thinking about having it, or have decided against it. Researchers want to hear from women in all of these situations.
You cannot take part if you are unable to provide your own informed consent, or if you cannot read and understand English, as the questionnaire materials are currently only available in English.
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.
- I am a woman aged 18 or older.
- I currently live in the UK.
- I have been diagnosed with Lynch syndrome through genetic testing.
- I can read and understand written English.
- I am willing to spend 10 to 15 minutes answering questions about my health and quality of life.
What does participation involve?
Taking part in this study is simple and does not involve any hospital visits, clinical exams, or changes to your medication. Everything can be done from the comfort of your own home.
You will first be asked to read an information sheet and complete a short consent form. After that, you will fill out a one-off questionnaire, which takes roughly 10 to 15 minutes to complete. You can do this securely online or on a paper form sent to you in the post, which you can return using a pre-paid envelope.
The survey asks simple questions about your general health background, your daily wellbeing, how you feel about your cancer risk, and some basic personal details. Once you submit the questionnaire, your participation is complete. There is no long-term follow-up required.
Potential risks and benefits
Locations (1)
- Barts Health NHS TrustCity onlyLondon, England
Common questions
Do I need to have had a hysterectomy to take part?
No. The study welcomes women with Lynch syndrome who have already had the surgery, as well as those who have not had it.
Do I have to travel to an appointment?
No. You can complete the survey entirely from home, either online on a computer or phone, or by using a paper form sent in the post.
Will taking part affect my usual healthcare?
No. Joining or choosing not to join will not affect your relationship with your doctors or any treatment you receive on the NHS.
How long will my involvement last?
It is a one-off survey that takes about 10 to 15 minutes to finish. Once you submit your answers, you have completed your part in the study.
Will my information be kept private?
Yes. All personal information and survey answers are kept strictly confidential and stored securely in accordance with UK data privacy laws.
How to find out more
Samuel Oxley
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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