A prospective study of 1540 colorectal cancer cases aged 16 -79, diagnosed in Scotland between 3rd January 2002 and 31st December 2003 was conducted.
The main aims are:
Report the number and proportion of cases that perceive they have a family history risk of
Compare waiting time with symptoms and behaviour after development of symptoms, between
cases that perceive a family history risk and do not perceive a family history risk.
Report the number and proportion of cases in this cohort with a family history of colorectal
cancer that meet Scottish clinical criteria for high or moderate family history risk.
A secondary aim is:
Describe the average delay time in symptom presentation and the factors contributing to delay in
presentation of lower gastrointestinal symptoms among cases with colorectal cancer and in
particular assess the importance of deprivation and comorbidity.
The distribution of sex and age at diagnosis were similar to other published population -based
colorectal cancer studies. Of the 1540 cases, 222 (14.9 %) cases perceived they had a family
history of colorectal cancer.
280 (18.2 %) cases out of 1540 were at a high or moderate family history risk according to
Scottish Executive Guidelines. Of these 280 cases, 133 (47.5 %) perceived they had a family
history of colorectal cancer. Of these 133 cases, only 51 (18.2 %) discussed this concern with their
GP and, only 12 (4.3 %) were referred to cancer genetic services.
Cases that perceived a family history risk of colorectal cancer were more likely to state they have
knowledge of colorectal cancer symptoms and more likely to think that the lower gastrointestinal
symptoms they develop are symptoms of colorectal cancer. However, this knowledge does not
prompt them to visit the GP with less delay after development of symptoms than those cases
with no perception of a family history risk of colorectal cancer.
There was no association found between deprivation, comorbidity and timing of presentation
following development of symptoms.
The more deprived group of patients were significantly more likely to report no knowledge of
colorectal cancer symptoms. They were also less likely not to inspect the toilet or the toilet paper
IMPLICATIONS FOR HEALTH SERVICE
Providing all health professionals with the knowledge and skills to take a family history and to
follow published guidelines when assessing family history risk would share the responsibility for
identification of individuals with a high or moderate family, improve the appropriateness of
referrals and reduce the inequality in access to cancer genetic services. It is estimated from this
study that each year there will be 49 families in the colorectal cancer population at high risk
eligible for mismatch repair gene analysis and 196 of their first- degree relatives that require two - yearly colonoscopy. In addition there will be 446 at moderate risk and eligible for microsatellite
testing and 1784 first- degree relatives of these cases that require a colonoscopy at age 35 and 55
The most deprived group of patients have the least knowledge of colorectal cancer symptoms
and the design of educational material should acknowledge this fact and ensure that it is
appropriate for this audience.
GPs do not appear to routinely use published guidelines to assess the family history of cases with
colorectal cancer. The most affluent group are more likely to be aware that family history is a risk
factor for colorectal cancer and those that discuss their concern of family history risk are more
likely to be referred to cancer genetic services. These findings suggest that inequality in access to
the cancer genetic services exists.
Individuals in Scotland, that perceive a family history of colorectal cancer are not prompted by
the development of lower gastrointestinal symptoms to visit their GP more quickly, nor does this
knowledge change their behaviour in discussing symptoms with other people, self -treating
symptoms, inspecting the toilet and toilet paper before flushing, even though they are more likely
to perceive that they have colorectal cancer before visiting their GP.
There appears to be little differences in presentation and development of lower gastrointestinal
symptoms or association with comorbidity between the most affluent and most deprived groups
suggesting that socioeconomic status and comorbidity have little effect on behaviour after
development of lower gastrointestinal symptoms.