Predictive testing for hereditary non-polyposis colorectal cancer: motivation, illness representations and short-term psychological impact

Abstract

This paper describes the motivation, recall of cancer risks, and illness representations of 40 individuals who had a predictive test for hereditary non-polyposis colorectal cancer (HNPCC) as well as the short-term impact of predictive testing by means of a semi-structured interview and self-report questionnaires. The main motives for predictive testing were early detection of cancer, knowledge of the children's risk and reduction of uncertainty. Overall, recall of cancer risks was good. Measurements of illness representations revealed low perceptions of "threat" of cancer and high confidence in the controllability of the disease. Distress was within normal ranges. Distress decreased significantly from pre- to post-test in non-carriers and did not in carriers. It also decreased in individuals for whom "reducing uncertainty" was a very important motive for the test, not in the others. Although part of the carriers did not have colonoscopies, all carriers intended to have regular colonoscopies in the future.