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Individuals With an Increased Risk of Colorectal Cancer: Perceived Benefits and Psychological Aspects of Surveillance by Means of Regular Colonoscopies

From the Departments of Clinical Genetics, Oncology and Pathology-Radiumhemmet and the Department of Gastroenterology, Karolinska University Hospital, Karolinska Institute; and The Oncology Unit of Radiumhemmet at Danderyds Hospital, Stockholm, Sweden

Address reprint requests to Annelie Liljegren, MD, PhD, Department of Clinical Oncology, Danderyds Hospital, 182 88 Stockholm, Sweden; e-mail: annelie.liljegren{at}telia.com

PURPOSE: To evaluate the psychological consequences of genetic counseling followed by a surveillance program using colonoscopy among individuals with increased risk of colorectal cancer.

PATIENTS AND METHODS: Two hundred sixty-five individuals, participating in a surveillance program with colonoscopy, were mailed a survey questionnaire that assessed their experience of the surveillance program and their perception of the risk of colorectal cancer. The Hospital Anxiety and Depression scale and the Swedish Short Form-36 Health Survey was also included.

RESULTS: Two hundred forty individuals completed the questionnaire and were divided into the following risk groups: risk group 1, an individual with a mutation in hMLH1 or hMSH2 and a lifetime colorectal cancer risk of 80% (n = 28); risk group 2, a lifetime colorectal cancer risk of 40% (n = 129); and risk group 3, a lifetime colorectal cancer risk of 20% (n = 83). Among all individuals, the mean for perceived benefit was 8.0, and the perception of discomfort was 3.3 on the visual analog scale (1-10). In risk group 1, 61% underestimated personal risks as being 40% or less. Approximately 50% of the subjects in risk groups 2 and 3 either under- or overestimated their lifetime risk. According to the Swedish Short Form-36 Health Survey and the Hospital Anxiety and Depression scale, the study sample resembled the reference population.

CONCLUSION: A majority of the study sample understood why they were under surveillance, and regular colonoscopies were well-tolerated. The wide range of risk perception as well as low-risk perception in mutation positive subjects is acceptable, as long as these individuals adhere to surveillance programs and do not demonstrate increased levels of anxiety or depression.

This work has been supported by grants from The Swedish Cancer Society, the Karolinska Institute, and The King Gustav V Jubilee Foundation.

This paper was presented at the 39th Annual Meeting of the American Society of Clinical Oncology, Chicago, IL, May 29-June 1, 2003 (poster # 369).

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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