Lynch syndrome (LS) is a condition that runs in families. It is caused by changes in genes that are involved in repairing DNA. People with LS have a higher chance of developing some cancers, particularly bowel cancer, because their DNA repair system does not work normally.
People with LS are recommended to have regular colonoscopies once they reach a certain age. A colonoscopy involves a small camera being passed into the bottom to look inside the bowel for signs of cancer and for polyps (growths that sometimes can develop into cancer). We call this ‘colonoscopy check-up’.
National UK healthcare guidelines recommend that people with LS have colonoscopy check-up every two years starting from age 25 or 35 years (depending on the specific gene change a person has) until age 75 years. In the UK, there is little information on how many people with LS are having colonoscopy check-up as recommended or what the main challenges are in having colonoscopy check-up.
Why did we do this study?
Our study aimed to answer the following questions about a group of people living with LS in England:
- What are the biggest challenges in having colonoscopy check-up?
- do the challenges people face differ depending on their sex, age group, or where they receive their care?
- What proportion are having colonoscopy check-up as recommended in the UK guidelines?
We hoped to identify how having colonoscopy check-up could be made an easier and more positive experience for people with LS.
How was the study carried out?
For this study, we used the LS research registry pilot that our research group set up in 2022. The registry pilot included people who were living with LS in England and had taken part in the at one of four CaPP3 sites (Birmingham, London, Manchester, Newcastle).
We developed the ‘Views, experiences, and challenges of colonoscopy check-up questionnaire’ to collect information from people in the registry pilot. We analysed this information, together with information previously collected as part of the registry pilot.
For participants who had a past or current cancer, we were able to analyse information about their check-up colonoscopies from an NHS database called .
Who took part in the study?
From Jan 2024 to Apr 2024, we sent the questionnaire to people in the registry pilot who were aged 25 years or older. Those who completed the questionnaire were included in the study.
What did we find?
Of 250 people who were sent the questionnaire, 231 (92%) completed it and were included in the study. Among participants, 52% were women and 48% were men, 95% were White British, and 17%, 53%, and 29% were aged 25-44 years, 45-64 years, and 65 years or older, respectively.
The four biggest challenges with colonoscopy check-up were:
- I have trouble drinking the laxative because of the taste
- I have trouble drinking the laxative because of the volume of liquid
- I worry about the results I might get
- I feel anxious when I think about having a colonoscopy
Women and younger participants (ages 25-44 years) felt there were more problems with how their care was organised, the information they received, and the support that was available, compared with men and the older age groups (ages 45-64 years or 65 years or older). Women found the bowel preparation and the colonoscopy itself more difficult than men. Younger participants reported the biggest time and money barriers to having colonoscopy check-up.
We analysed information on check-up colonoscopies for 110 (48%) participants. We found that 86% were having colonoscopy check-up every two years and 14% were not.
What do these results show?
Bowel preparation should be made easier to cope with for people with LS. This is the process of cleaning out the bowel before the colonoscopy by drinking a laxative, which many participants found difficult because of the taste and amount of liquid they had to drink. We need to focus on helping people feel less worried and anxious about having a colonoscopy and about the results they might get. We should be aware that challenges with colonoscopy check-up can differ for women and men and for people of different ages.
Possible improvements include giving a choice of different laxatives so people can choose the one most manageable for them. It is extremely important that when people are having their colonoscopies, they are listened to and their needs, wishes, and worries are taken seriously.
What is important to remember when thinking about these results?
Participants received care at one of four CaPP3 sites in England, which are some of the best centres for LS care in the country. We were able to analyse information on check-up colonoscopies only for participants who had a past or current cancer. Most participants were White British and middle-aged to older. Colonoscopy check-up for people with LS in England is now managed by the .
Acknowledgements
We thank our six patient representatives for their time and incredibly helpful input throughout the study. We thank the CaPP3 team, , and / for their support. A special thank you to everyone who took part in the study.