RecruitingOBSERVATIONAL

PSYLIVED: the Psychological Impacts of Living With an Inherited Colorectal Cancer Predisposition Syndrome

The PSYLIVED study is looking into how people in the UK cope emotionally when they live with, or are at risk of, an inherited form of bowel cancer. It's a 'qualitative' study, meaning it focuses on understanding experiences in depth rather than numbers. The aim is to shine a light on the emotional challenges faced by these individuals. By understanding their experiences better, researchers hope to improve support and care services that are specially designed for them, ultimately enhancing their well-being throughout their journey with genetic testing and diagnosis. They want to hear from 30 to 66 people about their personal experiences.

At a glance

Status

Recruiting

Sponsor

London North West Healthcare NHS Trust

Enrolment target

Start

18 Jun 2024

Estimated completion

01 Aug 2026

Lynch Syndrome Polyposis Syndrome, Hereditary Mixed, 1 Polyposis Syndrome, Hereditary Mixed, 2

What is this study about?

The PSYLIVED study is all about understanding the personal and emotional journey of people who have an increased risk of developing bowel cancer because of their genes, or who have already been diagnosed with an inherited form of bowel cancer. This type of cancer can run in families, and knowing you might be affected, or knowing you have it, can bring up many feelings and challenges. This study wants to explore these feelings in detail.

Researchers want to learn how individuals cope emotionally and adapt to these unique situations. They're interested in hearing about experiences at different stages – for example, before genetic testing, just after getting genetic test results, and much later on, as people learn to live with their condition. By gathering these personal stories, the study aims to identify what kind of support is truly needed.

Ultimately, the goal is to use this information to help improve the support and care services available for people and families affected by inherited bowel cancer. This could lead to better emotional support, more tailored information, and overall improvements in how healthcare professionals can best help individuals thrive.

Key takeaways

This study explores the emotional impact of inherited bowel cancer.
It aims to improve support services for affected individuals in the UK.
Participation involves a confidential, one-hour recorded interview.
You can take part if you have inherited bowel cancer or are at risk and offered genetic testing.
Interviews can be by phone/video call, or face-to-face in London.
Your identity and information will be kept private.

Who may be eligible?

This study is looking for adults aged 18 or over who live in the UK. You might be eligible if you've been diagnosed with an inherited form of bowel cancer, or if you've been offered genetic testing because of a family history that suggests an inherited risk.

It's important that you are able to understand what the study involves and can give your permission to take part. You also need to be able to communicate in English to share your experiences.

Unfortunately, if you are under 18, live outside the UK, or have difficulties with learning or communicating that would make it hard to do the interview, you won't be able to take part in this particular study.

Quick self-check

Are you 18 years old or older?
Do you live in the UK?
Have you been diagnosed with inherited bowel cancer, or offered genetic testing for it?
Can you communicate in English (speaking and understanding)?
Do you feel you can openly discuss your experiences?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part in the PSYLIVED study, you'll be asked to have a confidential, one-hour conversation with a researcher. This interview will be audio-recorded so that everything you say can be accurately written down later. During this process, your name and any other identifying details will be removed to protect your privacy and ensure your confidentiality.

The interviews will mainly happen over the phone or using Microsoft Teams, which makes it easier for people across the UK to participate. If you live near London and would prefer to meet in person, that might be an option. There are no follow-up appointments after this initial interview. The study is planning to recruit participants for about two years, starting in June 2024.

Potential risks and benefits

Taking part in this study offers the opportunity to share your personal experiences, which can be valuable for improving support services for others facing similar challenges. Your story could directly contribute to better future care. As the study involves discussing sensitive personal topics, some participants might find parts of the interview emotionally challenging; however, researchers aim to create a supportive environment. Any information you share will be kept confidential and anonymised. You have the right to withdraw from the study at any point, without giving a reason, and without it affecting your medical care.

Locations (1)

The St Mark's Centre for Familial Intestinal Cancer
London, United Kingdom· Recruiting

Common questions

What exactly is 'inherited colorectal cancer'?

This refers to bowel cancer that is caused by a faulty gene passed down through families. It means you have a higher chance of developing it.

What does a 'qualitative study' mean?

It means the study focuses on understanding people's experiences, thoughts, and feelings in detail, rather than just collecting numbers.

Will my interview be private?

Yes, absolutely. Your interview will be recorded, but it will be made anonymous when it's written down, so your identity will be protected.

Do I have to have had cancer to take part?

No, you don't. You can also participate if you are at risk of inherited bowel cancer and have been offered genetic testing, even if you haven't had cancer yourself.

How long will the interview take?

Each interview is expected to last for about one hour.

How to find out more

Laura Monje-Garcia

Laura.monje-garcia@nhs.net 0044 20 8453 2656 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.