Clinical trial NCT06126120: Colonoscopy Check-up in People With Lynch Syndrome
Official title: Prevalence, Determinants, and Challenges of Adherence With Colonoscopy Check-up in People With Lynch Syndrome: a Questionnaire-based Study
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Lynch Syndrome
Keywords: Lynch Syndrome
Colonoscopy
Surveillance
Lead sponsor: Imperial College London
Sponsor class: OTHER
First posted: 2023-11-13
Enrollment: 231
Sex: ALL
Minimum age (years): 25
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: OTHER
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: This study will include people who are in the Lynch Syndrome registry pilot and meet the eligibility criteria for the present study. The Lynch Syndrome registry pilot is recruiting people with Lynch Syndrome who are aged \>18 years and in the CaPP3 trial.

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.


Eligibility criteria: 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

Primary outcomes:
measure: Participant non-adherence to 2-yearly colonoscopy check-up.
timeFrame: 1 day
Secondary outcomes:
measure: The four most important challenges to having colonoscopy check-up for participants.
timeFrame: 1 day
Other outcomes:
Locations:
city: London
country: United Kingdom
facility: 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
Study officials:
affiliation: Imperial College London
name: Amanda J Cross, PhD
role: PRINCIPAL_INVESTIGATOR
References: