Colonoscopy Check-up in People With Lynch Syndrome

NCT06126120 | Completed Results

• 1 other identifier: IRAS 329468
• Study Type: observational
• Target: 231
• Locations: 1 country
• Sites: 1

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 investigated the:

• percentage who underwent 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 undergoing colonoscopy check-up This study collected information from people in the 'Lynch syndrome research registry pilot' using a questionnaire. The Cancer Screening and Prevention Research Group (CSPRG) at Imperial College London set up the Lynch syndrome research registry pilot, which included adults with Lynch syndrome who had previously participated in the Cancer Prevention Programme 3 (CaPP3) trial. The present study included people who took part in the Lynch syndrome research registry pilot, provided consent to be contacted about future research, and were aged ≥25 years. People who had undergone surgery to remove their rectum were excluded. The investigators used 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 research registry pilot. Participation involved completing the questionnaire only. The study was completed over approximately one year from administering the questionnaire in January 2024 to sharing results with participants in December 2024.

Conditions

Lynch Syndrome

Keywords

Lynch Syndrome; Colonoscopy; Surveillance

Outcome Measures

Primary Outcomes (1)

• Participant Non-adherence to 2-yearly Colonoscopy Check-up.

  Participant non-adherence to 2-yearly colonoscopy check-up was assessed using data from the national Hospital Episode Statistics (HES) database. Non-adherence was calculated based on the interval(s) between participants' 2 or 3 most recent check-up colonoscopies, depending on data availability, and the interval between participants' most recent check-up colonoscopy and questionnaire completion. Colonoscopy data recorded between December 1995 (when the earliest colonoscopy was recorded in the HES extract) and April 2024 (the final month in which participants completed the questionnaire) were used. Participant non-adherence was reported as a percentage.

  Up to approximately 13 years (median 5 years), based on the interval(s) between participants' 2 or 3 most recent check-up colonoscopies and the interval between participants' most recent check-up colonoscopy and questionnaire completion.

Secondary Outcomes (1)

• The 4 Most Important Challenges to Having Colonoscopy Check-up for Participants.

  At time of questionnaire (1 day)

Eligibility Criteria

• Age: 25 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

This study included people who were in the Lynch syndrome research registry pilot and who met the eligibility criteria for the present study.

You may qualify if:

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

You may not qualify if:

• People who had undergone surgery involving removal of their rectum

Sponsors & Collaborators

• Imperial College London: lead

Study Sites (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, W2 1NY, United Kingdom

Location

MeSH Terms

Conditions

Colorectal Neoplasms, Hereditary Nonpolyposis

Condition Hierarchy (Ancestors)

Colorectal Neoplasms; Intestinal Neoplasms; Gastrointestinal Neoplasms; Digestive System Neoplasms; Neoplasms by Site; Neoplasms; Neoplastic Syndromes, Hereditary; Digestive System Diseases; Gastrointestinal Diseases; Colonic Diseases; Intestinal Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; DNA Repair-Deficiency Disorders; Metabolic Diseases; Nutritional and Metabolic Diseases

Limitations and Caveats

Participants were receiving care at four of the best centres for Lynch syndrome in England. We were able to analyse information on check-up colonoscopies only for participants who had a past or current cancer. Data for this study were largely collected before colonoscopy check-up for people living with Lynch syndrome in England moved to the national Bowel Cancer Screening Programme.

Results Point of Contact

• Title: Dr Emma Robbins
• Organization: Imperial College London

e.robbins@imperial.ac.uk

+44 20 7594 3021

Study Officials

• Amanda J Cross, PhD

  Imperial College London

  PRINCIPAL INVESTIGATOR

Publication Agreements

• PI is Sponsor Employee: Yes

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 3, 2023
• First Posted: November 13, 2023
• Study Start: January 17, 2024
• Primary Completion: April 4, 2024
• Study Completion: December 31, 2024
• Last Updated: June 5, 2026
• Results First Posted: June 5, 2026

Record last verified: 2026-05

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)