Reasons given by relatives of colorectal cancer patients for not undergoing screening
Introduction
Colorectal cancer (CRC) is a major cause of morbidity and mortality in the Western world [1], [2]. Relatives of CRC patients have an increased risk of the disease, and this risk increases with increasing strength of family history and younger age of diagnosis in relatives [3], [4], [5], [6]. Various agencies have published guidelines for CRC screening in relatives of CRC patients. Some recommend that relatives of CRC patients follow population screening guidelines, but that they start at an earlier age than the general population [7], while others make specific recommendations for a colonoscopy, starting at an age that is dependent on the age of the youngest case of CRC in the family [8], [9].
While there have been several studies that examine the most common reasons for choosing not to be screened in the general population (for a review, see Ref. [10]), few studies have looked specifically at those at increased risk because of their CRC family history. Qualitative studies that have examined relatives of CRC patients have identified some interesting issues: Surgeons, but not general practitioners, have been found to be sources of screening information and newspapers and magazines are cited as common sources of CRC information [11]. Notably, many of these participants were referred for screening after presenting to their physician with symptoms, and the asymptomatic nature of screening was not well understood by the participants. Another study, aiming to identify benefits and barriers of CRC screening, found that the lack of public awareness about CRC was frequently described as a barrier, as was lack of clear recommendations by physicians [12]. Participants also expressed concerns about the efficacy of various screening modalities, as well as the fear of positive results and embarrassment. Benefits of CRC screening described by participants were limited to endoscopic screening; freedom from worry about CRC, reassurance, immediate results, and the ability to detect cancer early as well as remove polyps were cited by the groups.
The subjects for this report were participants in a larger comparison of screeners vs. nonscreeners among relatives of CRC patients [13]. We present here a more detailed descriptive analysis of the nonscreeners only, with our main objective the identification and characterization of different “types” of nonscreeners. The identification of such subgroups could further our understanding of why some individuals are not screened despite their increased risk and may promote the development of tailored interventions designed to increase the uptake of appropriate screening.
Section snippets
Methods
Participants were accrued through the Ontario site of the NIH-funded Cooperative Family Registry for Colorectal Cancer Studies (CFR); the protocols for the Ontario registry have been described elsewhere [14]. Briefly, CRC patients aged 18–75 diagnosed in the province of Ontario are invited to participate by completing a family history questionnaire, an epidemiologic risk factor questionnaire, releasing medical records, and providing biological samples. These probands are also asked to invite
Results
Based on the responses to the Personal History Questionnaire, there were 247 nonscreeners who were eligible for the telephone interview. Of these, 164 (66%) agreed to be interviewed. Thirty-two respondents were either not residing in Canada or not a first-degree relative of a CRC patient (or both) and were excluded from further analysis, leaving a total of 132 nonscreeners for this study.
These 132 nonscreeners provided a variety of reasons when asked why they had not yet undergone CRC
Discussion
We have attempted to identify and describe discrete groups of individuals who have not been screened for colorectal cancer despite having a positive family history of at least one first degree relative. The most frequently cited reason for not screening was the absence of symptoms. This finding supports those from other studies, primarily from occupational settings [17], [18], as well as findings from qualitative studies of increased-risk relatives [11], [12] and average-risk individuals [19],
Acknowledgements
Supported by the Canadian Institutes of Health Research grant no. CRT-43821. LM was supported by a doctoral studentship from the National Cancer Institute of Canada with funds from the Canadian Cancer Society. Personal History Questionnaire data collection was supported by the National Cancer Institute, National Institutes of Health under RFA # CA-95-011, and through cooperative agreements with members of the Colon Cancer Family Registry and the Ontario Registry for Studies of Familial
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