Gastroenterology

Gastroenterology

Volume 128, Issue 2, February 2005, Pages 280-287
Gastroenterology

Clinical-alimentary tract
Screening behavior of individuals at high risk for colorectal cancer

https://doi.org/10.1053/j.gastro.2004.11.002Get rights and content

Background & Aims: Periodic colonoscopy is an effective means of reducing the incidence and mortality of colorectal cancer in individuals with a family history of the disease. The aims of this study were to determine the degree of compliance and to identify the factors related significantly to noncompliance with periodic screening in this high-risk population. Methods: A total of 178 individuals who had undergone genetic counseling for colorectal cancer between 1986 and 1998 and who had been advised to undergo periodic screening because of familial colorectal cancer (FCRC) or hereditary nonpolyposis colorectal cancer (HNPCC) were invited to complete a self-report questionnaire on psychosocial issues and screening experiences. Compliance data were derived from medical records and via self-report. Results: A total of 149 individuals (84%) participated in the study. Noncompliance with screening advice was rare (in 3% of cases), but significant delays (more than 1 year) in undergoing screening were observed in approximately 25% of the cases. The number of perceived barriers to screening (eg, discomfort, embarrassment) was the only variable related significantly to noncompliance/screening delay (odds ratio, 1.2; 95% confidence interval, 1.1–1.3). Use of sedatives during the procedure and receipt of a reminder letter seemed to facilitate better compliance. Conclusions: Although few high-risk individuals abstain from screening entirely, approximately one in 4 deviates significantly from the recommended frequency of screening. Increased compliance may be achieved by reducing the discomfort and embarrassment associated with the procedure and by the use of reminder letters.

Section snippets

Study sample

The study sample was composed of individuals counseled by a clinical geneticist for the familial occurrence of colorectal cancer between 1986 and 1998 in one of the 3 family cancer clinics in Amsterdam (The Netherlands Cancer Institute, the VU University Medical Center, and the Academic Medical Center of the University of Amsterdam).

In total, 214 individuals were counseled for FCRC or HNPCC during this period. Of these, 36 were excluded because they were ultimately found to have a low risk for

Response

Of the 178 eligible individuals, 149 (84%) returned a completed questionnaire. Respondents were significantly older than nonrespondents (mean age, 45.8 vs 39.3 years; P < .01). No statistically significant differences were found between the respondents and the nonrespondents with regard to any other sociodemographic and clinical variables.

Characteristics of the study sample

Sixty-one percent of the study sample was classified as HNPCC, based on the Amsterdam criteria I (Table 2).44 Of those tested for mutation status (n = 45), 31

Discussion

The compliance rates that we observed varied between 72% (according to medical records) and 84% (based on self-report). These relatively high rates might be explained, at least in part, by the fact that all individuals had undergone genetic counseling at their own request, whereas in other studies individuals were initially invited for screening by letter17 or via an affected first-degree relative.19, 52 At the same time, however, it is important to note that we assessed repeated compliance

References (57)

  • A.R. Neilson et al.

    Determinants of persistent compliance with screening for colorectal cancer

    Soc Sci Med

    (1995)
  • M.L. Slattery et al.

    Family history of cancer and colon cancer riskthe Utah Population Database

    J Natl Cancer Inst

    (1994)
  • H.T. Lynch et al.

    Hereditary colorectal cancer

    N Engl J Med

    (2003)
  • L.A. Aaltonen et al.

    Incidence of hereditary nonpolyposis colorectal cancer and the feasibility of molecular screening for the disease

    N Engl J Med

    (1998)
  • R.S. Houlston et al.

    Screening and genetic counselling for relatives of patients with colorectal cancer in a family cancer clinic

    BMJ

    (1990)
  • M.G. Dunlop

    Guidance on large bowel surveillance for people with two first degree relatives with colorectal cancer or one first degree relative diagnosed with colorectal cancer under 45 years

    Gut

    (2002)
  • S. Carpenter et al.

    A screening clinic for relatives of patients with colorectal cancer in a district general hospital

    Gut

    (1995)
  • L. Renkonen-Sinisalo et al.

    Surveillance improves survival of colorectal cancer in patients with hereditary nonpolyposis colorectal cancer

    Cancer Detect Prev

    (2000)
  • S. Syngal et al.

    Benefits of colonoscopic surveillance and prophylactic colectomy in patients with hereditary nonpolyposis colorectal cancer mutations

    Ann Intern Med

    (1998)
  • A.J. Markowitz et al.

    Screening and surveillance for colorectal cancer

    Semin Oncol

    (1999)
  • H.F. Vasen

    Clinical diagnosis and management of hereditary colorectal cancer syndromes

    J Clin Oncol

    (2000)
  • S.W. Vernon

    Participation in colorectal cancer screeninga review

    J Natl Cancer Inst

    (1997)
  • B. Levin

    Screening for colorectal cancer

    Cancer Control

    (1996)
  • H.T. Lynch et al.

    Cancer control problems in the lynch syndromes

    Dis Colon Rectum

    (1993)
  • B.M. Stephenson et al.

    Feasibility of family based screening for colorectal neoplasiaexperience in one general surgical practice

    Gut

    (1993)
  • M.A. Harris et al.

    A survey of screening compliance among first degree relatives of people with colon cancer in New South Wales

    J Med Screen

    (1997)
  • D.W. Hadley et al.

    Colon cancer screening practices after genetic counseling and testing for hereditary nonpolyposis colorectal cancer

    J Clin Oncol

    (2004)
  • M. Ponz de Leon et al.

    Genetic testing among high-risk individuals in families with hereditary nonpolyposis colorectal cancer

    Br J Cancer

    (2004)
  • Cited by (89)

    • The predicted effect and cost-effectiveness of tailoring colonoscopic surveillance according to mismatch repair gene in patients with Lynch syndrome

      2022, Genetics in Medicine
      Citation Excerpt :

      Should new evidence emerge suggesting variable velocity, tailored surveillance interval will need to be considered. We considered the entirety of the population with LS and the results were aggregated on the basis of the relative proportion of each MMR gene,31 as opposed to a compartmentalized single MMR gene perspective, incorporating observed adherence rate to interval-specific colonoscopic surveillance.10,32-35 There is potential evidence that the relative distribution of each MMR gene in LS changes over time because of the complete mix of screening and detection overlay.

    • Colorectal cancer screening in the familial risk population: Is colonoscopy still the strategy of choice?

      2016, Gastroenterologia y Hepatologia
      Citation Excerpt :

      Participation may be influenced by the screening test offered. Indeed, colonoscopy participation was higher in younger age groups in two studies compared with older adults.60,61 High educational level was associated with greater screening participation in three out of eight studies, but the remaining others found no such association.59

    • Availability and scope of integrated screening for patients with Lynch syndrome

      2015, International Journal of Gynecology and Obstetrics
    View all citing articles on Scopus
    View full text