Colonoscopy Check-up in People With Lynch Syndrome

Completed

• Conditions: Lynch Syndrome

• Registration Number: NCT06126120
• Lead Sponsor: Imperial College London

Brief Summary

Lynch Syndrome, an inherited condition, increases bowel cancer risk. People with Lynch Syndrome are recommended to have regular colonoscopies where a camera in a tube is used to look inside the bowel for cancer and for polyps (growths that sometimes can become cancerous). UK guidelines recommend that people with Lynch Syndrome have colonoscopy check-up every 2 years after reaching a certain age; however, they face many challenges which make it difficult to have the recommended check-up.

Among a subset of people with Lynch Syndrome in England, this study will investigate the:

* percentage who are having colonoscopy check-up as recommended by UK guidelines

* factors influencing whether a person is more/less likely to have the recommended colonoscopy check-up

* views, experiences, and challenges of living with Lynch Syndrome and colonoscopy check-up

This study will collect information from people in the 'Lynch Syndrome registry pilot' using a questionnaire. The Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London are conducting the Lynch Syndrome registry pilot, which is recruiting people with Lynch Syndrome who are aged \>18 years and in the Cancer Prevention Programme 3 (CaPP3) trial, from Nov 2022-Nov 2023.

This study will include people in the Lynch Syndrome registry pilot who provided consent on the registry pilot consent form to be contacted about future research and are aged ≥25 years. People who have had previous surgery to remove their rectum will be excluded.

The investigators will use the 'Views, experiences, and challenges of colonoscopy check-up' questionnaire, together with a few pieces of additional information previously collected as part of the Lynch Syndrome registry pilot.

Participation involves completing the questionnaire only. The study will take approximately one year from administering the questionnaire to sharing results with participants.

Detailed Description

Not available

Study Timeline

• Study First Submitted: 2023-11-03
• Study First Submitted QC: 2023-11-08
• Study First Posted: 2023-11-13
• Study Start: 2024-01-17
• Primary Completion: 2024-04-04
• Study Completion: 2024-12-31
• Status Verified: 2025-04
• Last Update Submitted: 2025-04-29
• Last Update Posted: 2025-04-30

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 231

Inclusion Criteria

• People in the Lynch Syndrome registry pilot who have provided consent to be contacted about future research and are aged ≥25 years

Exclusion Criteria

• People who have had surgery involving removal of their rectum

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Participant non-adherence to 2-yearly colonoscopy check-up.	1 day	Participant non-adherence to 2-yearly colonoscopy check-up will be assessed on a single occasion, considering participants' three most recent colonoscopy check-ups, measured as a percentage.

Secondary Outcome Measures

Name	Time	Method
The four most important challenges to having colonoscopy check-up for participants.	1 day	The four most important challenges to having colonoscopy check-up will be assessed on a single occasion, considering participants' responses in the questionnaire. The questionnaire asks participants to select their most important challenges from a given list, and the top four selections will be considered the most important challenges.

Trial Locations

Locations (1)

Cancer Screening and Prevention Research Group (CSPRG), Department of Surgery and Cancer, Queen Elizabeth The Queen Mother (QEQM) Building, St Mary's Hospital, Imperial College London; 🇬🇧 London, United Kingdom