Assessment of education and counselling offered by a familial colorectal cancer clinic

Abstract

We have evaluated whether or not client expectations, in terms of education and information needs, have been met by a multi-disciplinary familial colorectal cancer clinic. The study used a pre- and post-clinic questionnaire design and 126 (84 women, 42 men) clients of the clinic participated. The most common reason for coming to the clinic is to 'find out whether there is a gene for colorectal cancer in the family', followed by 'to reduce risk for bowel cancer' and 'concern for children's risk'. Clients would have preferred to receive more information before attendance at the clinic to help with preparation. Information given during the clinic increased knowledge of bowel cancer genetics and had a positive effect on the accuracy of some clients' perceptions of their risk of developing cancer. In multivariate analysis, higher risk perceptions, higher education level and greater baseline knowledge predicted post-clinic knowledge of bowel cancer genetics and an increase in knowledge. Client reports of the presence of a genetic counsellor or medical geneticist in the session also predicted post-clinic knowledge and an increase in knowledge. Most participants felt they received enough information during the clinic session on various aspects of familial colorectal cancer, but the desire for more written information on prevention, including lifestyle actions, was expressed by many.

QUOTE-geneca: development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer

“…Important informational motives were to discuss own and/or family members' risk of cancer and to receive information on early detection of cancer and preventive actions (Bleiker et al, 1997;Brain et al, 2000;Collins et al, 2000a;Hallowell et al, 1997;Julian-Reynier et al, 1996;van Asperen et al, 2002), know the risk for one's children, or of passing on increased susceptibility to them (Bleiker et al, 1997;Collins et al, 2000a;Julian-Reynier et al, 1996;van Asperen et al, 2002), and to discuss one's family history and/or find out about genetic testing (Brain et al, 2000;van Asperen et al, 2002). A recent review (Bleiker et al, 2003) showed that these were also main motives for requesting genetic testing for hereditary cancer.…”

“…It is therefore likely that counselees wish to discuss family issues during counseling. Finally, results suggest that counselees often are unfamiliar with the process of genetic counseling, including uncertainty about what will occur during counseling (Collins et al, 2000a;Hallowell et al, 1997) and the exact role of the counselor amongst other health care providers (Bernhardt et al, 2000). Apart from discussing medical and emotional issues, counselees may thus also wish to receive information on the procedure of counseling.…”

Genetic services for men: The preferences of men with a family history of prostate cancer

“…A total of 59.6% of respondents indicated they had received less than enough information about this risk. Similarly, the mean satisfaction rating for the amount of support they had received about prostate cancer in the family was 2.40 (SD ϭ 0.92, range "not enough" [1], "some but not enough" [3], "enough" [5]), with 43.9% responding they had received no support and a further 43.6% responding they had not received enough support. Kruskal-Wallis tests showed no significant differences between the men's ratings for the amount of information they had received ( 2 ϭ 0.2.18, P ϭ .89) depending on whether men were unpartnered or had a partner with low or high concern about family history.…”

“…When asked to comment on their concern regarding prostate cancer in the family, the mean concern rating was 3.48 (standard deviation [SD] ϭ 1.16, range "not at all" [1] to "ex- …”

“…Twenty-two percent (21.8%) of the men were "extremely" concerned about their family history of cancer, and only 6.4% indicated they were "not at all" concerned. Respondents thought the amount of information they had received about their prostate cancer risk was less than enough with a mean rating for the amount of information of 2.15 (SD ϭ 0.92, range: "not enough" [1], "enough" [3], "too much" [5]). A total of 59.6% of respondents indicated they had received less than enough information about this risk.…”