Reasons given by relatives of colorectal cancer patients for not undergoing screening

Abstract

Background

Relatives of colorectal cancer (CRC) patients are at increased risk of developing CRC themselves. Although this increased-risk group could benefit from screening, many do not undergo screening. Little is known about the reasons why this group chooses not to be screened, and understanding these reasons has implications for the development of tailored interventions.

Methods

Telephone interviews were conducted with 132 nonscreening relatives of CRC patients. Variables collected included reasons for not screening, intent to be screened in the future, potential prompts to future screening, and perceived benefits and barriers to screening as well as perceived CRC risk.

Results

We were able to categorize the majority of nonscreeners into four discrete types: a group who cite feeling healthy as their reason for not screening (n = 40), a group whose physicians have not endorsed screening (n = 18), a younger group who were told to wait to be screened (n = 21), and a group who anticipate discomfort and pain with screening (n = 20).

Conclusions

It is possible to identify distinct groups of nonscreeners according to their particular barriers and reasons for not screening. Tailored interventions can be designed to address the specific issues in each of these groups.

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.