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Short paper

Most participate in faecal immunochemical test-based colorectal cancer screening out of curiosity about their chances of developing cancer Maaike J. Dentersa, Patrick M. Bossuytb, Marije Deutekomc, Paul Fockensa and Evelien Dekkera Several clinical trials have shown that colorectal cancer (CRC) screening can reduce cancer deaths. Its effectiveness is affected by the participation level. To develop targeted invitations, we need to understand why individual persons decide to participate. To evaluate reasons for participation among persons invited for faecal immunochemical test-based CRC screening, a total of 10 265 asymptomatic persons aged 50–75 years were invited to a Dutch CRC screening pilot (2008–2009). Reasons for participation were elicited by a questionnaire. A total of 3554 (66%) participants returned the questionnaire. Obtaining more certainty about the chances of developing cancer (ticked by 88%) and the occurrence of cancer in the family or the circle of acquaintances (18%) were the most frequently selected reasons for participation. We also explored reasons for nonparticipation among nonparticipants. In this subgroup, comorbidity and the absence of symptoms were the most frequently reported

Introduction Colorectal cancer (CRC)-screening programs aim at detecting cancer and its precursor lesions in an early stage and thereby at decreasing disease-related morbidity and mortality. To understand the reasons for accepting or declining an invitation for faecal immunochemical test (FIT)-based CRC screening, we conducted a questionnaire survey.

Methods Data were collected in the second round of a Dutch FITbased CRC screening pilot in the Netherlands (Van Rossum et al., 2008; Denters et al., 2009). Invitations for the first round were sent out in 2006 and for the second round in 2008. In this pilot program, a random sample of average-risk persons aged 50–75 years, living in the Amsterdam region, was selected from the population database, on the basis of their date of birth and the postal code. Institutionalized persons and first-round participants who had tested positive and those who no longer fulfilled the eligibility criteria were not invited. Persons who newly met these criteria, as well as first-round nonparticipants, were invited. Eligible persons received an invitation package including an invitation letter, an information leaflet, a frequently asked questions card, an illustrated set of test instructions, and the stool test 0959-8278 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.

reasons for declining to participate, but the response rate was low. The vast majority of the participants decided to take up the screening because they wanted to know more about their chances of developing cancer. European Journal of Cancer Prevention 24:176–179 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved. European Journal of Cancer Prevention 2015, 24:176–179 Keywords: colorectal cancer, faecal immunochemical test, participation, screening Departments of aGastroenterology and Hepatology, bBiostatistics and Clinical Epidemiology and cSocial Medicine, Academic Medical Centre, Amsterdam, The Netherlands Correspondence to Evelien Dekker, MD, PhD, Department of Gastroenterology and Hepatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105 AZ Amsterdam, The Netherlands Tel: + 31 20 566 4702; fax: + 31 20 691 7033; e-mail: [email protected] Received 28 January 2013 Accepted 22 January 2015

(OC-sensor; Eiken Chemicals Co., Tokyo, Japan). The leaflet (Dutch only) included information on CRC, benefits and harms of screening participation, and risks and possible complications associated with the screening test and follow-up procedures. Persons could perform the stool test at home and were invited to return the test in an included postage-free envelope. All invitees were sent a questionnaire by postal mail 2 weeks after the initial invitation. Invitees who had already performed the stool test or who were planning to do so were asked to provide us with the reason(s) for which they decided to participate in the pilot (Table 1). Invitees not planning on performing the stool test were asked to provide us with their reason(s) (Table 2). Response options were derived from a previous telephone survey about the reasons for participation and nonparticipation in the FIT screening (Van Rijn et al., 2008). In both questionnaires, multiple response options were allowed. Selecting ‘other’ and entering their reason into a blank space was also possible. We presented invitees with additional items, on the basis of the Health Belief Model (HBM), one of the conceptual models used before to explain actual or planned screening behaviour (Rosenstock, 1966). Responses could be scored on a four-point Likert scale, anchored at DOI: 10.1097/CEJ.0000000000000139

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< 0.0001 0.0009 0.72

< 0.0001

0.81

0.0018

P value

Most participate in FIT-based CRC Denters et al. 177

Table 2

Reasons for nonparticipation (n = 340), times ticked (%)

56 (12) 11 (2) 6 (1) 24 (5) 22 (5) 8 (2) 165 (6) 53 (2) 36 (1) < 0.0001 0.53 0.57 163 (9) 45 (3) 22 (1) 245 86 50 359

(7) (2) (1) (10)

101 (7) 33 (2) 15 (1)

144 (7) 53 (3) 35 (2)

0.45 0.36 0.08

81 (5) 40 (2%) 28 (2)

51 (11) 49 (11) 143 (5) 0.84 120 (7) 143 (9) 278 (8)

100 (5)

< 0.0001

121 (7)

95 (20) 80 (18) 0.54 329 (19) 208 (13) 656 (18)

448 (22)

< 0.0001

327 (18)

481 (18)

406 (83) 0.007

389 (88)

P value

1505 (87)

P value

1415 (91) 3132 (88)

1717 (86)

< 0.0001

1621 (90)

2337 (89)

First-time invitees (n = 487) Previous nonresponders (n = 442) Previous responders (n = 2625) From 65 (n = 1809) Under 65 (n = 1737)

Obtaining more certainty about my chances of getting cancer Bowel cancer occurs in my family/ circle of acquaintances Partner/family members and/or acquaintances urged me into participating To help in research I am afraid that cancer will be found I have a personal history of cancer Miscellaneous

Sex [n (%)]

Female (n = 1999) Male (n = 1555) Overall (n = 3554) [n (%)] Reason

Table 1

Reasons for participation (n = 3554), times ticked (%)

Age [n (%)]

Previous screening behaviour [n (%)]

Reason Other disease/under medical treatment I have no symptoms and therefore feel that participation is not necessary I think the stool test is a bothersome test I recently had a colonoscopy I think the chance that something will be found is very small in my case I’d rather not undergo a colonoscopy at a later stage No time/too much trouble I cannot sufficiently oversee the consequences of participation at this time History of blood in stool over the last 3 months I am afraid that cancer will be found I do not have faith in the stool test History of changed bowel habits over the last 3 months Participation discouraged by others I think the information in the leaflet is not clear enough Miscellaneous

Overall (n = 340) [n (%)] 110 (32) 99 (29) 60 (18) 44 (13) 36 (11) 34 (10) 30 (9) 27 (8) 23 18 13 10 5 5 63

(7) (5) (4) (3) (1) (1) (19)

1 (totally agree) and 4 (totally disagree). We also asked about people’s general health perception, frequency of doctor visits, family history of CRC, and knowing persons who also participated in the screening pilot. Participation was defined as the actual return of the stool test at closure of the trial. All invitees who completed the questionnaire were included in the analysis. Associations between participation and item responses were explored using univariate and multivariable logistic regression, with age and sex as additional explanatory variables (SPSS Inc, Released 2009. PASW Statistics for Windows, Version 18.0. Chicago, Illinois, USA).

Results Between August 2008 and October 2009, 10 265 averagerisk persons were invited (49% male, mean age 60 ± 7 years). Of them, 5367 (52%) returned the FIT; 3554 participants (66%) returned the questionnaire as against 340 nonparticipants (7%). In both groups, questionnaire responders were older on average (60 ± 7 vs. 59 ± 7 and 62 ± 8 vs. 59 ± 7, respectively; P < 0.001). Among the nonparticipants, more women returned the questionnaire than men [187/340 (55%) vs. 2078/4558 (46%); P =0.001]. Table 1 summarizes the frequency of reported reasons for participation by sex, age and previous screening behaviour. Obtaining more certainty about the chances of developing cancer was by far the most frequently selected reason (88%), followed by the occurrence of cancer in the family/circle of acquaintances (18%). As can be appreciated from the table, significant differences were observed between men and women, between older and younger persons and between previous participants, nonparticipants and first-time invitees. Previous nonparticipants and first-time invitees more often participated because they were urged by others. Also, first-time invitees more often wanted to help in research.

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178

European Journal of Cancer Prevention 2015, Vol 24 No 3

The questionnaire return rate was only 7% among nonparticipants. Therefore, we decided to explore the reasons for nonparticipation in the subgroup of nonparticipants only. Table 2 summarizes the frequency with which each of the offered reasons was ticked by the responding nonparticipants. Having another disease or being under medical treatment was ticked by 32%, an absence of symptoms by 29% and the perception that the stool test is bothersome by 18%. Table 3 summarizes associations between health beliefs and other items and participation in screening. Considering cancer as a serious condition and believing CRC is treatable, as well as having a good perception of one’s health and knowing others who participated in the pilot, were associated with participation. Being afraid of the screening results, seeing negative consequences to participation and perceiving the stool test as burdensome were negatively associated with participation. In the multivariable analysis, these associations were also statistically significant, except for the items ‘seeing cancer as a serious condition’, ‘believing that colorectal cancer is treatable’ and ‘fear of screening results’.

Discussion In the second round of this pilot FIT-based population programme, half of the invitees decided to participate. Among the responding participants, obtaining more certainty about one’s chances of developing cancer and CRC in friends or relatives were often reported as reasons for accepting the screening invitation. As expected, persons who generally perceive more benefits and fewer barriers were more likely to engage in screening. Knowing others who had also participated in the program was also associated with participation. Comorbidity, an absence of symptoms and an aversion to the stool test were Table 3

frequently cited reasons by nonparticipants who returned our questionnaire. We studied a real-life screening situation, not intended behaviour. It has been shown previously that intention and behaviour do not always correlate well (Herbert et al., 1997; Sheeran, 2002). Two-thirds of the participants returned the questionnaire, an acceptable response rate, but unfortunately, only a minority of the invitees who declined the invitation returned the questionnaire. This makes it hazardous to generalize our findings unconditionally to all nonparticipants. The collected information about reasons for nonparticipation may be used for deriving hypotheses for future studies, especially because we were somewhat startled to find that the absence of symptoms was a frequently reported reason for nonparticipation. This is consistent with other studies (DeWijkerslooth et al., 2012; Green et al., 2012). Future studies among a more representative group of persons should be performed to determine whether these findings can be reproduced. Should this be the case, then more emphasis should be placed on adequately informing all invitees about the program. The results of this study correspond well with those from previous studies. A recent Australian study among a random sample of average-risk persons aged 50–74 years found that people who perceived low barriers and high benefits to screening were significantly more likely to actually participate in the FIT screening (Gregory et al., 2011). Several other studies also observed a significant association between the perceived barriers and nonattendance (Thompson et al., 1986; Myers et al., 1994). Reports on associations between participation and most of the other determinants assessed in our study vary substantially, in part explainable by differences in the population studied and the methodology (Jepson et al., 2000).

Associations of individual-level health behaviour with participation Univariate

Determinants Perceptions on screening/colorectal cancer I think I have a higher risk of colorectal cancer than others my age I see cancer as a serious condition I believe that colorectal cancer is treatable Colorectal cancer screening is useful for people my age I’m afraid of the screening results Follow-up testing (colonoscopy) seems a burdensome investigation I think there are many negative consequences to participation in the pilot I think the stool test is a burdensome investigation General health perception/behaviour How would you rate your health in general?a On average, how often do you visit a doctor?b Personal circumstances Do you know anyone who (also) participated in this study? Does colorectal cancer occur in your family?

Multivariable

OR

95% CI

OR

1.04 0.66 0.78 3.44 0.78 1.02 0.35 0.27

0.88–1.23 0.54–0.80 0.63–0.98 2.86–4.17 0.67–0.91 0.85–1.20 0.30–0.41 0.24–0.32

Not includedc 1.08 0.82 2.56 1.14 Not included 0.56 0.37

1.39 1.06

1.19–1.62 0.90–1.24

1.25 Not included

1.04–1.51

2.33 1.25

1.85–2.94 0.88–1.75

1.79 Not included

1.37–2.38

CI, confidence interval; OR, odds ratio. 1–5 score; higher scores indicate a better perception of health. b Higher scores indicate a lower frequency of visiting a doctor. c Not included in multivariate analysis because of nonsignificant univariate association. a

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95% CI

0.82–1.40 0.61–1.10 2.00–3.23 0.93–1.39 0.45–0.69 0.31–0.45

Most participate in FIT-based CRC Denters et al. 179

When designing screening programs, it is important to keep in mind these reported reasons. Some may be well justified and understandable, but others may be based on erroneous conceptions or reveal removable barriers. Some of the determinants associated with participation are fixed factors that cannot be modified easily. Aversion to handling stool and believing that screening is (not) useful, however, are perceptions that could be the focus of additional interventions. Further educating invitees about the rationale behind screening might counteract the idea that participation is unnecessary in the absence of symptoms. This could be done by information leaflets, decision aids or by enhancing public awareness through media campaigns. Developing invitation strategies tailored to the behaviours and beliefs in specific subgroups may then facilitate informed decision-making and increase the effectiveness of screening programs (Jepson et al., 2000).

Acknowledgements Conflicts of interest

There are no conflicts of interest.

References Denters MJ, Deutekom M, Fockens P, Bossuyt PM, Dekker E (2009). Implementation of population screening for colorectal cancer by repeated fecal occult blood test in the Netherlands. BMC Gastroenterol 9:28.

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Most participate in faecal immunochemical test-based colorectal cancer screening out of curiosity about their chances of developing cancer.

Several clinical trials have shown that colorectal cancer (CRC) screening can reduce cancer deaths. Its effectiveness is affected by the participation...
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