Colonoscopy Check-up in People With Lynch Syndrome

Study Overview
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Brief Summary
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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.

Official Title
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Prevalence, Determinants, and Challenges of Adherence With Colonoscopy Check-up in People With Lynch Syndrome: a Questionnaire-based Study

Conditions
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Lynch Syndrome

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 25 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Participant non-adherence to 2-yearly colonoscopy check-up. | Participant non-adherence to 2-yearly colonoscopy check-up will be assessed on a single occasion, considering participants' three most recent colonoscopy check-ups. | 1 day | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| The four most important challenges to having colonoscopy check-up for participants. | The four most important challenges to having colonoscopy check-up will be assessed on a single occasion, considering participants' responses in the questionnaire. | 1 day | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Colonoscopy, Lynch Syndrome, Surveillance