Lynch Syndrome
Conditions
Keywords
Lynch Syndrome, Colonoscopy, Surveillance
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.
Interventions
None listed
Sponsors
Imperial College London
Study design
Observational model
OTHER
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
25 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* People in the Lynch syndrome research registry pilot who provided consent to be contacted about future research and were aged ≥25 years
Exclusion criteria
* People who had undergone surgery involving removal of their rectum
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Participant Non-adherence to 2-yearly Colonoscopy Check-up. | 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. | 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. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| The 4 Most Important Challenges to Having Colonoscopy Check-up for Participants. | At time of questionnaire (1 day) | The 4 most important challenges to having colonoscopy check-up were identified using participants' responses in the questionnaire. The questionnaire asked participants to select up to 4 challenges they considered most important from a given list of 41 challenges. The 4 challenges most frequently selected by participants were considered the most important. The results show, for each challenge, the number and proportion of participants who selected it as one of their biggest challenges. As participants could select more than one challenge, the counts and percentages for individual challenges do not sum to the total number of participants and 100%, respectively. |
Countries
United Kingdom
Contacts
PRINCIPAL_INVESTIGATORAmanda J Cross, PhD
Imperial College London
Participant flow
Recruitment details
Participants were recruited from the Lynch syndrome research registry pilot between 17 January 2024 and 4 April 2024.
Pre-assignment details
Of the 257 people in the registry pilot, seven were excluded at the initial participant eligibility assessment. The remaining 250 people were invited to take part in the present study, of whom 19 were subsequently excluded, either because the investigators were informed after invite that they met the exclusion criteria or because they did not respond to the questionnaire. This left 231 participants (92% of invitees). Participants were not assigned to any group or intervention.
Baseline characteristics
| Characteristic | — |
|---|---|
| Age, Customized Age group 25-44 years | 40 Participants |
| Age, Customized Age group 45-64 years | 123 Participants |
| Age, Customized Age group ≥65 years | 68 Participants |
| Race/Ethnicity, Customized Ethnicity Other | 11 Participants |
| Race/Ethnicity, Customized Ethnicity White British | 220 Participants |
| Sex: Female, Male Female | 121 Participants |
| Sex: Female, Male Male | 110 Participants |
| Site A | 55 Participants |
| Site B | 60 Participants |
| Site C | 79 Participants |
| Site D | 37 Participants |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 0 / 0 |
| other Total, other adverse events | 0 / 0 |
| serious Total, serious adverse events | 0 / 0 |
Outcome results
None listed