Awareness of inflammatory bowel disease-associated colorectal cancer risk and its management in patients with inflammatory bowel disease: a systematic review.
메타분석
1/5 보강
PICO 자동 추출 (휴리스틱, conf 2/4)
유사 논문P · Population 대상 환자/모집단
4674 participants (2481 with ulcerative colitis, 53.
I · Intervention 중재 / 시술
추출되지 않음
C · Comparison 대조 / 비교
추출되지 않음
O · Outcome 결과 / 결론
[CONCLUSIONS] Evidence on IBD patients' awareness of CRC risk and its management remains limited, restricting firm conclusion about the extent of knowledge and educational needs. Further research is required to better characterize patients' understanding and to inform targeted education strategies.
[BACKGROUND] Inflammatory bowel disease (IBD) is associated with an increased risk of colorectal cancer (CRC).
- 연구 설계 systematic review
APA
Khan F, Norton C, Czuber-Dochan W (2026). Awareness of inflammatory bowel disease-associated colorectal cancer risk and its management in patients with inflammatory bowel disease: a systematic review.. Crohn's & colitis 360, 8(1), otag001. https://doi.org/10.1093/crocol/otag001
MLA
Khan F, et al.. "Awareness of inflammatory bowel disease-associated colorectal cancer risk and its management in patients with inflammatory bowel disease: a systematic review.." Crohn's & colitis 360, vol. 8, no. 1, 2026, pp. otag001.
PMID
41635643 ↗
Abstract 한글 요약
[BACKGROUND] Inflammatory bowel disease (IBD) is associated with an increased risk of colorectal cancer (CRC). While several studies have explored patients' general knowledge of IBD, less is known about their awareness of CRC risk and its management. This systematic review aimed to synthesize the available evidence on IBD patients' awareness of CRC risk and its related management strategies.
[METHODS] Medline, EMBASE, and PubMed databases were searched from inception to November 2023. All study designs and publication types were considered. Non-English studies and those assessing only general IBD knowledge were excluded. The appraisal tool for cross-sectional studies (AXIS) was used to assess the quality of studies.
[RESULTS] Twenty-three studies (17 papers and 6 conference abstracts), including 4674 participants (2481 with ulcerative colitis, 53.5% females) were included. Overall, 18 studies assessed CRC risk knowledge, 7 reported attitudes toward cancer screening, and 8 explored knowledge or attitude regarding colectomy for dysplasia. Patients demonstrated moderate awareness of CRC risk, limited knowledge of risk factors, and moderate levels of fear regarding this complication. Awareness of the diagnostic role of colonoscopy was high, but attitudes toward the procedure were mixed, largely due to concerns about complications. Awareness of appropriate screening initiation and willingness to undergo colectomy for dysplasia, regardless of the risk level, were generally low.
[CONCLUSIONS] Evidence on IBD patients' awareness of CRC risk and its management remains limited, restricting firm conclusion about the extent of knowledge and educational needs. Further research is required to better characterize patients' understanding and to inform targeted education strategies.
[METHODS] Medline, EMBASE, and PubMed databases were searched from inception to November 2023. All study designs and publication types were considered. Non-English studies and those assessing only general IBD knowledge were excluded. The appraisal tool for cross-sectional studies (AXIS) was used to assess the quality of studies.
[RESULTS] Twenty-three studies (17 papers and 6 conference abstracts), including 4674 participants (2481 with ulcerative colitis, 53.5% females) were included. Overall, 18 studies assessed CRC risk knowledge, 7 reported attitudes toward cancer screening, and 8 explored knowledge or attitude regarding colectomy for dysplasia. Patients demonstrated moderate awareness of CRC risk, limited knowledge of risk factors, and moderate levels of fear regarding this complication. Awareness of the diagnostic role of colonoscopy was high, but attitudes toward the procedure were mixed, largely due to concerns about complications. Awareness of appropriate screening initiation and willingness to undergo colectomy for dysplasia, regardless of the risk level, were generally low.
[CONCLUSIONS] Evidence on IBD patients' awareness of CRC risk and its management remains limited, restricting firm conclusion about the extent of knowledge and educational needs. Further research is required to better characterize patients' understanding and to inform targeted education strategies.
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Introduction
Introduction
Inflammatory bowel disease (IBD) is a chronic inflammatory disorder of the gastrointestinal tract and has emerged as a major global public health challenge over the past decade.1,2 It affects more than 1.6 million people in North America, 1.5 million in Europe, and approximately 620 000 in the United Kingdom, with prevalence continuing to rise worldwide.3-5
IBD is a lifelong and often debilitating illness that requires continuous self-management and patient engagement.6 Chronic intestinal inflammations in IBD increases the risk of several complications, most notably colorectal cancer (CRC). The cumulative CRC risk is similar in ulcerative colitis (UC) and Crohn’s disease (CD) with colonic involvement, but markedly higher than in the general population (risk ratio 4.5 [1.3, 14.9]), and it often presents at a higher histologic grade.7 IBD-associated CRC accounts for 10%-15% of deaths in both UC and colonic CD.8-10
Multiple overlapping factors contribute to CRC development in IBD, including male sex, young age at UC diagnosis, long disease duration with extensive colonic involvement, a family history of sporadic CRC, colonic strictures in CD, and coexisting primary sclerosing cholangitis, particularly in UC.11-16 Recognizing these factors is essential to raising awareness of individualized cancer risk and for promoting adherence to screening and treatment strategies.
Early detection and timely intervention are critical to reducing IBD-related cancer mortality. Colonoscopy with biopsies remains the gold standard for detecting precancerous and cancerous lesions.17,18 International guidelines, including those from the European Crohn’s and Colitis Organization (ECCO), SCENIC, the American College of Gastroenterology (ACG), and the American Gastroenterological Association (AGA), recommend initiating surveillance colonoscopies 8 years after symptom onset, with follow-up intervals tailored to individual risk.19-22 Anti-inflammatory agents such as 5-acetylsalicylic acid (5-ASA) also play a chemo-preventive role by reducing inflammation and limiting progression to dysplasia.23 However, in UC, low-grade flat dysplasia carries a 20% risk of cancer and a 50% risk of progression into high-grade dysplasia within 5 years.24,25 Similar rates of progression from low- and high-grade dysplasia to adenocarcinoma have been reported in UC and CD, suggesting consistent surveillance strategies are needed across IBD subtypes.26 Colectomy remains the definitive treatment for dysplasia and cancer prevention in UC and CD, though it is a life-changing procedure with significant quality-of-life implications, necessitating informed decision-making.25, 27,28
Patient knowledge is a key determinant of engagement with disease management. Higher level of knowledge empower patients to make informed treatment decisions, support adherence to therapy, encourage healthier behaviors, and may reduce healthcare costs.29-33 The increased risk of IBD-associated CRC requires attention to patient education, surveillance, and shared decision-making. In particular, patients facing the possibility of colectomy for dysplasia must be well informed about risks and benefits to make timely and confident decisions. Understanding the level of CRC risk awareness among patients with IBD patients is therefore essential to identify gaps in knowledge and guide education and counselling strategies. This systematic review aims to explore, summarize, and critically appraise the literature on IBD patients’ knowledge of CRC risk, and their awareness and attitude toward its management.
Inflammatory bowel disease (IBD) is a chronic inflammatory disorder of the gastrointestinal tract and has emerged as a major global public health challenge over the past decade.1,2 It affects more than 1.6 million people in North America, 1.5 million in Europe, and approximately 620 000 in the United Kingdom, with prevalence continuing to rise worldwide.3-5
IBD is a lifelong and often debilitating illness that requires continuous self-management and patient engagement.6 Chronic intestinal inflammations in IBD increases the risk of several complications, most notably colorectal cancer (CRC). The cumulative CRC risk is similar in ulcerative colitis (UC) and Crohn’s disease (CD) with colonic involvement, but markedly higher than in the general population (risk ratio 4.5 [1.3, 14.9]), and it often presents at a higher histologic grade.7 IBD-associated CRC accounts for 10%-15% of deaths in both UC and colonic CD.8-10
Multiple overlapping factors contribute to CRC development in IBD, including male sex, young age at UC diagnosis, long disease duration with extensive colonic involvement, a family history of sporadic CRC, colonic strictures in CD, and coexisting primary sclerosing cholangitis, particularly in UC.11-16 Recognizing these factors is essential to raising awareness of individualized cancer risk and for promoting adherence to screening and treatment strategies.
Early detection and timely intervention are critical to reducing IBD-related cancer mortality. Colonoscopy with biopsies remains the gold standard for detecting precancerous and cancerous lesions.17,18 International guidelines, including those from the European Crohn’s and Colitis Organization (ECCO), SCENIC, the American College of Gastroenterology (ACG), and the American Gastroenterological Association (AGA), recommend initiating surveillance colonoscopies 8 years after symptom onset, with follow-up intervals tailored to individual risk.19-22 Anti-inflammatory agents such as 5-acetylsalicylic acid (5-ASA) also play a chemo-preventive role by reducing inflammation and limiting progression to dysplasia.23 However, in UC, low-grade flat dysplasia carries a 20% risk of cancer and a 50% risk of progression into high-grade dysplasia within 5 years.24,25 Similar rates of progression from low- and high-grade dysplasia to adenocarcinoma have been reported in UC and CD, suggesting consistent surveillance strategies are needed across IBD subtypes.26 Colectomy remains the definitive treatment for dysplasia and cancer prevention in UC and CD, though it is a life-changing procedure with significant quality-of-life implications, necessitating informed decision-making.25, 27,28
Patient knowledge is a key determinant of engagement with disease management. Higher level of knowledge empower patients to make informed treatment decisions, support adherence to therapy, encourage healthier behaviors, and may reduce healthcare costs.29-33 The increased risk of IBD-associated CRC requires attention to patient education, surveillance, and shared decision-making. In particular, patients facing the possibility of colectomy for dysplasia must be well informed about risks and benefits to make timely and confident decisions. Understanding the level of CRC risk awareness among patients with IBD patients is therefore essential to identify gaps in knowledge and guide education and counselling strategies. This systematic review aims to explore, summarize, and critically appraise the literature on IBD patients’ knowledge of CRC risk, and their awareness and attitude toward its management.
Materials and methods
Materials and methods
Scoping search
Prior to the formal database search, a scoping search was conducted in the Database of Abstracts of Reviews of Effects (DARE), the Cochrane Database of Systematic Reviews (CDSR), Medline, and PubMed, to identify existing or ongoing reviews on the topic of interest. This identified 1 review assessing general IBD knowledge in IBD patients,34 but, no systematic reviews specifically addressing patients’ knowledge of CRC risk.
The systematic approach for this review was developed in accordance with the Cochrane Handbook for Systematic Reviews and the Centre for Reviews and Dissemination (CRD) guidance.35,36
Search strategy
A comprehensive search was carried out in November 2023 using Ovid Medline (1946 to November 03, 2023), EMBASE (1974-2023 November 03) and PubMed databases, without filters or limits, to identify all relevant studies and conference abstracts. The following search terms were applied: (Inflammatory bowel disease (MESH) OR Inflammatory bowel disease OR Ulcerative Colitis OR Crohn’s Disease OR IBD OR UC OR CD) AND (Colorectal Cancer (MESH) OR Colorectal Cancer/Carcinoma/Neoplasia OR Large Bowel Cancer/Carcinoma/Neoplasia OR Colon Cancer/Carcinoma/Neoplasia OR Rectal Cancer/Carcinoma/Neoplasia OR CRC) AND (Knowledge (MESH) OR knowledge OR Aware$OR Update$OR Inform$) (Table S1). Grey literature was sought in the System for Information on Grey Literature in Europe (OpenSIGLE) and the Healthcare Management Information Consortium (HMIC).35 Reference lists of included studies were screened to identify additional eligible publications.
Inclusion and exclusion criteria
Eligible studies included those involving adult IBD patients that assessed knowledge, attitudes, or awareness regarding CRC risk, screening, surveillance, or treatment. All study designs and publication types (full articles and abstracts) were included to maintain a pragmatic approach.37 Studies evaluating only general IBD knowledge, and those published in languages other than English (due to lack of translation resources), were excluded.
Study selection and data extraction
Search results from the databases were merged, and duplicates were removed. The remaining studies were screened by title and abstract, followed by full-text review to confirm eligibility. Data extraction was guided by an adapted version of the Cochrane “checklist of items to consider in data extraction.”35
Data analysis
Data relevant to the review question were extracted and analyzed thematically to identify key concepts and patterns. These themes were synthesized into a comprehensive narrative summary of existing evidence on IBD patients’ knowledge of CRC. Meta-analysis was not undertaken due to heterogeneity in study designs, data collection instruments, and outcome measures. Instead, a narrative synthesis of findings was conducted.
Quality assessment tool
The methodological quality of included studies was assessed independently by 2 authors (F.K. and C.N.) using the 20-item appraisal tool for cross-sectional studies (AXIS) (Table S2).38 The tool does not generate a composite score but uses “yes,” “no,” and “don’t know” responses to evaluate study characteristics such as sample size justification, appropriateness of study aims and design, reliability of data collection and response/non–response bias. For the purpose of this review, we adapted the AXIS tool to produce a numerical score. Each “yes” response was awarded 1 point (&cenveo_unknown_entity_wingdings_F0FC;), While “no” (&cenveo_unknown_entity_wingdings_F0FB;) and “don’t know” (?) responses were scored 0. This yielded a possible range of 0-20, with scores of ≥17 indicating high quality (green), 13-16 moderate quality (yellow), and ≤12 low quality (red).
Conference abstracts could not be assessed with the full AXIS tool due to limited reporting and inherent biases; however, the tool was adapted to appraise them (see Tables S3a and S3b). No studies were excluded based on quality assessment. Strengths and limitations of each study were documented (Tables S3a and S3b).
Scoping search
Prior to the formal database search, a scoping search was conducted in the Database of Abstracts of Reviews of Effects (DARE), the Cochrane Database of Systematic Reviews (CDSR), Medline, and PubMed, to identify existing or ongoing reviews on the topic of interest. This identified 1 review assessing general IBD knowledge in IBD patients,34 but, no systematic reviews specifically addressing patients’ knowledge of CRC risk.
The systematic approach for this review was developed in accordance with the Cochrane Handbook for Systematic Reviews and the Centre for Reviews and Dissemination (CRD) guidance.35,36
Search strategy
A comprehensive search was carried out in November 2023 using Ovid Medline (1946 to November 03, 2023), EMBASE (1974-2023 November 03) and PubMed databases, without filters or limits, to identify all relevant studies and conference abstracts. The following search terms were applied: (Inflammatory bowel disease (MESH) OR Inflammatory bowel disease OR Ulcerative Colitis OR Crohn’s Disease OR IBD OR UC OR CD) AND (Colorectal Cancer (MESH) OR Colorectal Cancer/Carcinoma/Neoplasia OR Large Bowel Cancer/Carcinoma/Neoplasia OR Colon Cancer/Carcinoma/Neoplasia OR Rectal Cancer/Carcinoma/Neoplasia OR CRC) AND (Knowledge (MESH) OR knowledge OR Aware$OR Update$OR Inform$) (Table S1). Grey literature was sought in the System for Information on Grey Literature in Europe (OpenSIGLE) and the Healthcare Management Information Consortium (HMIC).35 Reference lists of included studies were screened to identify additional eligible publications.
Inclusion and exclusion criteria
Eligible studies included those involving adult IBD patients that assessed knowledge, attitudes, or awareness regarding CRC risk, screening, surveillance, or treatment. All study designs and publication types (full articles and abstracts) were included to maintain a pragmatic approach.37 Studies evaluating only general IBD knowledge, and those published in languages other than English (due to lack of translation resources), were excluded.
Study selection and data extraction
Search results from the databases were merged, and duplicates were removed. The remaining studies were screened by title and abstract, followed by full-text review to confirm eligibility. Data extraction was guided by an adapted version of the Cochrane “checklist of items to consider in data extraction.”35
Data analysis
Data relevant to the review question were extracted and analyzed thematically to identify key concepts and patterns. These themes were synthesized into a comprehensive narrative summary of existing evidence on IBD patients’ knowledge of CRC. Meta-analysis was not undertaken due to heterogeneity in study designs, data collection instruments, and outcome measures. Instead, a narrative synthesis of findings was conducted.
Quality assessment tool
The methodological quality of included studies was assessed independently by 2 authors (F.K. and C.N.) using the 20-item appraisal tool for cross-sectional studies (AXIS) (Table S2).38 The tool does not generate a composite score but uses “yes,” “no,” and “don’t know” responses to evaluate study characteristics such as sample size justification, appropriateness of study aims and design, reliability of data collection and response/non–response bias. For the purpose of this review, we adapted the AXIS tool to produce a numerical score. Each “yes” response was awarded 1 point (&cenveo_unknown_entity_wingdings_F0FC;), While “no” (&cenveo_unknown_entity_wingdings_F0FB;) and “don’t know” (?) responses were scored 0. This yielded a possible range of 0-20, with scores of ≥17 indicating high quality (green), 13-16 moderate quality (yellow), and ≤12 low quality (red).
Conference abstracts could not be assessed with the full AXIS tool due to limited reporting and inherent biases; however, the tool was adapted to appraise them (see Tables S3a and S3b). No studies were excluded based on quality assessment. Strengths and limitations of each study were documented (Tables S3a and S3b).
Results
Results
The systematic database search yielded a total of 5543 records, of which 23 studies met the inclusion criteria. No additional records were identified through grey literature or reference list screening. The study selection process is outlined in the PRISMA flow diagram (Figure 1).
Characteristics of the studies
The characteristics of the included studies are summarized in Table 1. Among the 23 studies, 17 were full-length peer review journal articles31,39-43,45,46,48-52,54,56,57,60 and 6 were conference abstracts.44,47,53,55,58,59 All studies employed observational design, comprising 21 cross-sectional studies,39-60 1 retrospective cohort,31 and 1 case-control study.41 Eight studies31,40,41,43,46,49,51,54 employed the 24-item validated Crohn’s and Colitis Knowledge Score questionnaire (CCKNOW),40 while the remaining studies used study-specific questionnaires (Table 1). The majority of studies were conducted in the United Kingdom39-41,44,51,57,59,60 followed by East and South Asia,41,43,46,49,56 Europe,31,45,47,52,55,58 and the Americas.48,50,54
Patient characteristics
A total of 4674 participants were included in the review, comprising 2481 with UC, 1592 with CD, and 40 with indeterminate-IBD (I-IBD); the IBD subtype was not specified in the remaining 561 participants. While most studies included patients with all types of IBD patients, 3 studies specifically focused on patients with UC.39,40,50 Among studies reporting sex, 53.5% participants were females. Seven studies did not report participants’ age; in the remaining studies, mean ages ranged from 20 to 67 years. Disease duration was unreported in 7 studies; in the other 15, duration ranged from 1 to 18 years, with most participants having disease for less than 10 years. Educational level, reported in 11 studies, was generally high, with 80% of participants having completed high school and over 50% having completed college or university education (Table 1).
Quality appraisal of included studies
The detailed critical appraisal using the AXIS tool is provided in Tables S2 and S3a, and S3b and summarized in Table 1. Among the 17 full-length papers, study quality ranged from moderate to low. None of the studies met al. 20 AXIS checklist items. Two studies met 16 criteria52,60 4 studies met 15 criteria46,48,51,54 and 8 studies met 14 criteria31,40,43,45,49,50,52,54 with the remainder fulfilling 13 or fewer criteria.39,41,42 The most frequently unmet items included justification of sample size (Q3), appropriateness of sample selection process (Q6), categorization of non–responders and assessment of non–response bias (Q7, Q13, and Q14) and incomplete reporting of conflicts of interest and funding, which could affect interpretation of results (Q19).
Main findings
Six main themes were identified across the included studies, providing a structured framework to summarize the existing literature on IBD patients’ knowledge of CRC. The main findings from all included studies are presented in Table 1.
CRC risk awareness
Eighteen studies assessed awareness of CRC risk among patients with IBD. Four were published between 1995 and 2004,39-41 4 between 2005 and 201443,44,46,47 and the remaining after 2015. Reported awareness varied widely by country and study design.
The highest levels of awareness were consistently observed in the United Kingdom, reaching 88% in a 2023 survey60 and 86% among patients with long-standing extensive UC in 1996.39 In 2009, 71% of UK patients with extensive IBD (>8 years’ duration) recognized their elevated CRC risk.44 Comparable awareness rates (60%-75%) were reported in the United Kingdom (1999, 2023), Hong Kong (2004), the United States and Australia (2015), Korea (2015, 2019), France (2016), and Portugal (2022).40,42,49,52,56,58,59
Moderate awareness (about one-third of patients) was reported in Ireland (36.5% in 2011)47 and Romania (32% in 2017).55 Lower awareness, around one-fifth, was observed in Italy (22.6% in 2015)31 and Chile (19.7% in 2016).54
Very low awareness (≤15%) was documented in Sri Lanka (15% in 2010)46 and the United Kingdom (2015).51 The lowest recorded level came from Iran in 2005, where only 5% of patients assessed with the CCKNOW questionnaire were aware of their CRC risk.43
A notable finding came from a 2002 United Kingdom case-control study, which reported that only 29% of IBD patients who had already developed CRC were aware of the association, suggesting that personal cancer experience did not necessarily improve awareness.41
Methodology strongly influenced findings: studies using study-specific questionnaires generally reported higher awareness, while those employing the CCKNOW questionnaire yielded consistently lower scores. Higher awareness was associated with longer disease duration (>5 years), higher educational attainment, previous IBD-related hospitalizations, and membership of patient organisations.42,52,56,59 Two studies, from France (2016)52 and Korea (2015)49 found significantly higher awareness among patients with UC compared to those with CD.
Awareness of symptoms and risk factors for IBD-associated CRC
Three studies assessed knowledge of CRC symptoms and risk factors.40,53,55 In the United Kingdom (1999), only 7% of IBD patients believed that blood in the stool was a definite sign of CRC.40 Similarly, in an interviewer-led cross-sectional study in Saudi Arabia (2016), only 16% of patients correctly identified CRC symptoms without prompting, and only 27% recognized IBD as a CRC risk factor without prompting.53 In contrast, an abstract from Romania (2017) reported substantial awareness, with 68% of participants able to identify factors that increase CRC risk in IBD.55 These findings highlight striking variability in patients’ understanding of both CRC symptoms and risk factors, with awareness ranging from very limited to relatively high depending on study design, population, and context.
Self-perceived risk, concerns, and fear of CRC
Two studies assessed how patients with IBD perceived their personal risk of developing CRC.45,57 In the Netherlands (2010), participants estimated their 10-year risk after IBD diagnosis to be around 25%.45 In the United Kingdom (2020), nearly one-third of patients (29%) believed their lifetime risk was between 33% and 50%.57
Five studies explored the extent to which CRC was a source of concern among people with IBD.48,50,52,57,60 In a USA study (2011), 37% of patients identified CRC as their greatest worry related to IBD.50 In France (2016), 26% reported CRC risk as their primary fear.52 A UK study (2020) measured cancer-related anxiety using the Cancer Worry Scale and found generally low levels of concern, with a median score of 8 out of 24.57
Three other studies used a visual analogue scale (0-10) to assess fear of CRC. Mean fear scores were 5.42 in the USA (2011), 4.79 in France (2016), and 6.37 in the United Kingdom (2023, SD ± 2.8), suggesting moderate to high levels of worry in some settings.48,52,60
Overall, these findings indicate that patients’ self-perceived CRC risk varies consistently across settings and often does not align with epidemiological estimates.
Awareness of CRC screening
Several studies investigated IBD patients’ awareness of CRC screening and its role in early cancer detection. Early evidence from the UK showed relatively low awareness: in 1996 only 44% of participants recognized that CRC screening was possible,39 and in 2009, just 22% understood the role of surveillance in detecting dysplasia.44
More recent studies reported greater awareness of the appropriate screening tool. In France (2016), Romania (2017), and the United Kingdom (2023), around 85% of patients correctly identified colonoscopy as the most effective method for CRC screening.52,55,59 However, findings were not consistent; a 2023 UK study reported that only 20% of patients identified colonoscopy as the appropriate test.60
Awareness of the recommended timing for screening, typically 8 years after IBD diagnosis, was particularly limited. Approximately one-third of patients in France (2016)52 and Romania (2017)55 identified this timing, but knowledge was much lower elsewhere: only 9.4% in Ireland (2011)47 and 6%-12% in the United Kingdom (2023)59,60 identified the correct timeframe.
Together, these findings suggest that while recognition of colonoscopy as the key screening tool has improved over time, awareness of when to initiate surveillance remains poor. This gap highlights the need for targeted patient education to support timely and effective CRC prevention in IBD populations.
Patient’s attitude toward colonoscopy and its role in CRC risk reduction
Four studies examined how patients with IBD perceive the role of colonoscopy in reducing CRC risk and their willingness to undergo the procedure.45,48,57,59 In the United States (2011), patients estimated their lifetime risk of developing CRC without routine colonoscopy to be as high as 56%,48 whereas in the Netherlands in 2010, annual surveillance was believed to reduce this risk to just 13%.45 In the United Kingdom (2020), nearly 3-quarters of patients (71%) agreed that regular surveillance helps prevent CRC.57 Collectively, these findings suggest that patients consistently view colonoscopy as effective, although the perceived magnitude of benefit varies.
Despite this recognition, concerns about the procedure were common. In the Netherlands (2010), one-quarter of respondents reported fears of serious complications such as perforation or bleeding.45 In the United Kingdom (2023), the most frequently cited barriers were bowel preparation (48%) and procedural discomfort (43%).59 In the United States (2011), although 60% of patients valued colonoscopy for the information it provided and 40% for its educational value, 70% found the test unpleasant and 55% reported anxiety as a deterrent.48
Over time, willingness to undergo colonoscopy appears to have increased, particularly in the United Kingdom. In 1996, just over half of patients (54%) said they would agree to screening, while 44% were unsure and 77% requested more information.39 By 2023, agreement rates had risen substantially, with 90% and 77% of patients in 2 separate UK studies indicating they would follow their clinician’s recommendation for surveillance colonoscopy.59,60 This trend suggests that, while procedural concerns remain, improved in patient–clinician communication and growing awareness of colonoscopy’s preventive role have contributed to higher acceptance rates.
Knowledge and attitude toward dysplasia treatment
Two studies assessed IBD patients’ knowledge of dysplasia management.39,44 In a United Kingdom (2009), only 11% of patients recognized colectomy as the standard treatment for dysplasia.44 An earlier UK study (1996) found that nearly half (47%) of participants were unaware that a cancer diagnosis on screening would necessitate surgery.39 While these findings suggests some improvement over time, overall knowledge remained limited.
Six studies investigated patients’ willingness to undergo colectomy if recommended.45,50,52,55,57,60 In the Netherlands (2010) and Romania (2017), approximately half of participants said they would agree to colectomy if their CRC risk exceeded 20%.45,55 By contrast, a United Kingdom (2020), patients reported a much higher risk threshold for agreeing to colectomy, with median risk perception of 50% (IQR 30-70.8) before considering surgery.57 In France (2016) and the United Kingdom (2023), nearly 50% of patients indicated they would decline colectomy even with a 10% risk of cancer.52,60 The main reasons cited for refusing surgery included fear of complications such as death (44%), living with a stoma (37%), postoperative infections (21.6%), and being in remission at the time of recommendation (17%).52,60 Similarly, a study from the United States and Australia (2015) reported that two-thirds of participants viewed surgery as a last resort, while one-fifth wanted to receive information about colectomy immediately after their UC diagnosis.50
Overall, these findings indicate that willingness to undergo colectomy varies across countries and over time, influenced by perceived surgical risks, cultural attitudes, and differences in patient education regarding dysplasia management.
Role of healthcare providers
Patient involvement in decision-making was explored in several studies. In the United States and Australia (2015), the majority of patients (87%) expressed a preference for shared decision-making with their gastroenterologist.50 By contrast, more recent UK studies (2023) highlighted perceived gaps in communication: nearly half of patients reported never having discussed their increased cancer risk with their doctor, and almost two-thirds reported they had not been informed about the role of screening and surveillance.60 Similarly, in another UK study from the same year, only 37% of respondents recalled a conversation with their IBD healthcare professional regarding CRC risk.59
Patients’ experiences with dysplasia management also suggested limited engagement. In a UK study (2020), nearly one-quarter of patients (23%) did not feel well informed about dysplasia management. Over half perceived that clinicians more often recommended colectomy over surveillance, while less than half (47%) felt that decisions were truly shared, and 17% felt that the choices were largely made by their doctor.57
Taken together, these findings indicate a temporal and geographical contrast. While earlier studies from the United States and Australia reflected strong patient preference and participation in shared decision-making, recent UK studies reveal substantial communication gaps and limited patient involvement. These results emphasize the need for improved clinician–patient dialogue and education around CRC risk and dysplasia management in IBD.
The systematic database search yielded a total of 5543 records, of which 23 studies met the inclusion criteria. No additional records were identified through grey literature or reference list screening. The study selection process is outlined in the PRISMA flow diagram (Figure 1).
Characteristics of the studies
The characteristics of the included studies are summarized in Table 1. Among the 23 studies, 17 were full-length peer review journal articles31,39-43,45,46,48-52,54,56,57,60 and 6 were conference abstracts.44,47,53,55,58,59 All studies employed observational design, comprising 21 cross-sectional studies,39-60 1 retrospective cohort,31 and 1 case-control study.41 Eight studies31,40,41,43,46,49,51,54 employed the 24-item validated Crohn’s and Colitis Knowledge Score questionnaire (CCKNOW),40 while the remaining studies used study-specific questionnaires (Table 1). The majority of studies were conducted in the United Kingdom39-41,44,51,57,59,60 followed by East and South Asia,41,43,46,49,56 Europe,31,45,47,52,55,58 and the Americas.48,50,54
Patient characteristics
A total of 4674 participants were included in the review, comprising 2481 with UC, 1592 with CD, and 40 with indeterminate-IBD (I-IBD); the IBD subtype was not specified in the remaining 561 participants. While most studies included patients with all types of IBD patients, 3 studies specifically focused on patients with UC.39,40,50 Among studies reporting sex, 53.5% participants were females. Seven studies did not report participants’ age; in the remaining studies, mean ages ranged from 20 to 67 years. Disease duration was unreported in 7 studies; in the other 15, duration ranged from 1 to 18 years, with most participants having disease for less than 10 years. Educational level, reported in 11 studies, was generally high, with 80% of participants having completed high school and over 50% having completed college or university education (Table 1).
Quality appraisal of included studies
The detailed critical appraisal using the AXIS tool is provided in Tables S2 and S3a, and S3b and summarized in Table 1. Among the 17 full-length papers, study quality ranged from moderate to low. None of the studies met al. 20 AXIS checklist items. Two studies met 16 criteria52,60 4 studies met 15 criteria46,48,51,54 and 8 studies met 14 criteria31,40,43,45,49,50,52,54 with the remainder fulfilling 13 or fewer criteria.39,41,42 The most frequently unmet items included justification of sample size (Q3), appropriateness of sample selection process (Q6), categorization of non–responders and assessment of non–response bias (Q7, Q13, and Q14) and incomplete reporting of conflicts of interest and funding, which could affect interpretation of results (Q19).
Main findings
Six main themes were identified across the included studies, providing a structured framework to summarize the existing literature on IBD patients’ knowledge of CRC. The main findings from all included studies are presented in Table 1.
CRC risk awareness
Eighteen studies assessed awareness of CRC risk among patients with IBD. Four were published between 1995 and 2004,39-41 4 between 2005 and 201443,44,46,47 and the remaining after 2015. Reported awareness varied widely by country and study design.
The highest levels of awareness were consistently observed in the United Kingdom, reaching 88% in a 2023 survey60 and 86% among patients with long-standing extensive UC in 1996.39 In 2009, 71% of UK patients with extensive IBD (>8 years’ duration) recognized their elevated CRC risk.44 Comparable awareness rates (60%-75%) were reported in the United Kingdom (1999, 2023), Hong Kong (2004), the United States and Australia (2015), Korea (2015, 2019), France (2016), and Portugal (2022).40,42,49,52,56,58,59
Moderate awareness (about one-third of patients) was reported in Ireland (36.5% in 2011)47 and Romania (32% in 2017).55 Lower awareness, around one-fifth, was observed in Italy (22.6% in 2015)31 and Chile (19.7% in 2016).54
Very low awareness (≤15%) was documented in Sri Lanka (15% in 2010)46 and the United Kingdom (2015).51 The lowest recorded level came from Iran in 2005, where only 5% of patients assessed with the CCKNOW questionnaire were aware of their CRC risk.43
A notable finding came from a 2002 United Kingdom case-control study, which reported that only 29% of IBD patients who had already developed CRC were aware of the association, suggesting that personal cancer experience did not necessarily improve awareness.41
Methodology strongly influenced findings: studies using study-specific questionnaires generally reported higher awareness, while those employing the CCKNOW questionnaire yielded consistently lower scores. Higher awareness was associated with longer disease duration (>5 years), higher educational attainment, previous IBD-related hospitalizations, and membership of patient organisations.42,52,56,59 Two studies, from France (2016)52 and Korea (2015)49 found significantly higher awareness among patients with UC compared to those with CD.
Awareness of symptoms and risk factors for IBD-associated CRC
Three studies assessed knowledge of CRC symptoms and risk factors.40,53,55 In the United Kingdom (1999), only 7% of IBD patients believed that blood in the stool was a definite sign of CRC.40 Similarly, in an interviewer-led cross-sectional study in Saudi Arabia (2016), only 16% of patients correctly identified CRC symptoms without prompting, and only 27% recognized IBD as a CRC risk factor without prompting.53 In contrast, an abstract from Romania (2017) reported substantial awareness, with 68% of participants able to identify factors that increase CRC risk in IBD.55 These findings highlight striking variability in patients’ understanding of both CRC symptoms and risk factors, with awareness ranging from very limited to relatively high depending on study design, population, and context.
Self-perceived risk, concerns, and fear of CRC
Two studies assessed how patients with IBD perceived their personal risk of developing CRC.45,57 In the Netherlands (2010), participants estimated their 10-year risk after IBD diagnosis to be around 25%.45 In the United Kingdom (2020), nearly one-third of patients (29%) believed their lifetime risk was between 33% and 50%.57
Five studies explored the extent to which CRC was a source of concern among people with IBD.48,50,52,57,60 In a USA study (2011), 37% of patients identified CRC as their greatest worry related to IBD.50 In France (2016), 26% reported CRC risk as their primary fear.52 A UK study (2020) measured cancer-related anxiety using the Cancer Worry Scale and found generally low levels of concern, with a median score of 8 out of 24.57
Three other studies used a visual analogue scale (0-10) to assess fear of CRC. Mean fear scores were 5.42 in the USA (2011), 4.79 in France (2016), and 6.37 in the United Kingdom (2023, SD ± 2.8), suggesting moderate to high levels of worry in some settings.48,52,60
Overall, these findings indicate that patients’ self-perceived CRC risk varies consistently across settings and often does not align with epidemiological estimates.
Awareness of CRC screening
Several studies investigated IBD patients’ awareness of CRC screening and its role in early cancer detection. Early evidence from the UK showed relatively low awareness: in 1996 only 44% of participants recognized that CRC screening was possible,39 and in 2009, just 22% understood the role of surveillance in detecting dysplasia.44
More recent studies reported greater awareness of the appropriate screening tool. In France (2016), Romania (2017), and the United Kingdom (2023), around 85% of patients correctly identified colonoscopy as the most effective method for CRC screening.52,55,59 However, findings were not consistent; a 2023 UK study reported that only 20% of patients identified colonoscopy as the appropriate test.60
Awareness of the recommended timing for screening, typically 8 years after IBD diagnosis, was particularly limited. Approximately one-third of patients in France (2016)52 and Romania (2017)55 identified this timing, but knowledge was much lower elsewhere: only 9.4% in Ireland (2011)47 and 6%-12% in the United Kingdom (2023)59,60 identified the correct timeframe.
Together, these findings suggest that while recognition of colonoscopy as the key screening tool has improved over time, awareness of when to initiate surveillance remains poor. This gap highlights the need for targeted patient education to support timely and effective CRC prevention in IBD populations.
Patient’s attitude toward colonoscopy and its role in CRC risk reduction
Four studies examined how patients with IBD perceive the role of colonoscopy in reducing CRC risk and their willingness to undergo the procedure.45,48,57,59 In the United States (2011), patients estimated their lifetime risk of developing CRC without routine colonoscopy to be as high as 56%,48 whereas in the Netherlands in 2010, annual surveillance was believed to reduce this risk to just 13%.45 In the United Kingdom (2020), nearly 3-quarters of patients (71%) agreed that regular surveillance helps prevent CRC.57 Collectively, these findings suggest that patients consistently view colonoscopy as effective, although the perceived magnitude of benefit varies.
Despite this recognition, concerns about the procedure were common. In the Netherlands (2010), one-quarter of respondents reported fears of serious complications such as perforation or bleeding.45 In the United Kingdom (2023), the most frequently cited barriers were bowel preparation (48%) and procedural discomfort (43%).59 In the United States (2011), although 60% of patients valued colonoscopy for the information it provided and 40% for its educational value, 70% found the test unpleasant and 55% reported anxiety as a deterrent.48
Over time, willingness to undergo colonoscopy appears to have increased, particularly in the United Kingdom. In 1996, just over half of patients (54%) said they would agree to screening, while 44% were unsure and 77% requested more information.39 By 2023, agreement rates had risen substantially, with 90% and 77% of patients in 2 separate UK studies indicating they would follow their clinician’s recommendation for surveillance colonoscopy.59,60 This trend suggests that, while procedural concerns remain, improved in patient–clinician communication and growing awareness of colonoscopy’s preventive role have contributed to higher acceptance rates.
Knowledge and attitude toward dysplasia treatment
Two studies assessed IBD patients’ knowledge of dysplasia management.39,44 In a United Kingdom (2009), only 11% of patients recognized colectomy as the standard treatment for dysplasia.44 An earlier UK study (1996) found that nearly half (47%) of participants were unaware that a cancer diagnosis on screening would necessitate surgery.39 While these findings suggests some improvement over time, overall knowledge remained limited.
Six studies investigated patients’ willingness to undergo colectomy if recommended.45,50,52,55,57,60 In the Netherlands (2010) and Romania (2017), approximately half of participants said they would agree to colectomy if their CRC risk exceeded 20%.45,55 By contrast, a United Kingdom (2020), patients reported a much higher risk threshold for agreeing to colectomy, with median risk perception of 50% (IQR 30-70.8) before considering surgery.57 In France (2016) and the United Kingdom (2023), nearly 50% of patients indicated they would decline colectomy even with a 10% risk of cancer.52,60 The main reasons cited for refusing surgery included fear of complications such as death (44%), living with a stoma (37%), postoperative infections (21.6%), and being in remission at the time of recommendation (17%).52,60 Similarly, a study from the United States and Australia (2015) reported that two-thirds of participants viewed surgery as a last resort, while one-fifth wanted to receive information about colectomy immediately after their UC diagnosis.50
Overall, these findings indicate that willingness to undergo colectomy varies across countries and over time, influenced by perceived surgical risks, cultural attitudes, and differences in patient education regarding dysplasia management.
Role of healthcare providers
Patient involvement in decision-making was explored in several studies. In the United States and Australia (2015), the majority of patients (87%) expressed a preference for shared decision-making with their gastroenterologist.50 By contrast, more recent UK studies (2023) highlighted perceived gaps in communication: nearly half of patients reported never having discussed their increased cancer risk with their doctor, and almost two-thirds reported they had not been informed about the role of screening and surveillance.60 Similarly, in another UK study from the same year, only 37% of respondents recalled a conversation with their IBD healthcare professional regarding CRC risk.59
Patients’ experiences with dysplasia management also suggested limited engagement. In a UK study (2020), nearly one-quarter of patients (23%) did not feel well informed about dysplasia management. Over half perceived that clinicians more often recommended colectomy over surveillance, while less than half (47%) felt that decisions were truly shared, and 17% felt that the choices were largely made by their doctor.57
Taken together, these findings indicate a temporal and geographical contrast. While earlier studies from the United States and Australia reflected strong patient preference and participation in shared decision-making, recent UK studies reveal substantial communication gaps and limited patient involvement. These results emphasize the need for improved clinician–patient dialogue and education around CRC risk and dysplasia management in IBD.
Discussion
Discussion
This review identified limited but heterogeneous literature on IBD patients’ awareness of CRC and its management, with substantial variation across countries and time periods. Overall, awareness was moderate, but no clear global trend toward improvement was evident. Certain high-income countries, including the United Kingdom, Australia, United States, France, Korea, and Portugal, reported relatively higher awareness in both earlier (1996-2009)39,40,42,44 and more recent studies (2015-2023),49,51,52,56,58-60 suggesting that some healthcare systems may have successfully integrated CRC risk education into routine IBD care. This improvement may partly reflect the role of patient advocacy groups such as Crohn’s & Colitis UK61 and the Crohn’s & Colitis Foundation,62 which provide educational resources, promote patient engagement, and facilitate access to specialist care. In contrast, persistently low awareness in Iran, Sri Lanka, Italy, Chile, and Romania highlights geographic disparities, likely reflecting differences in healthcare infrastructure, access to gastroenterology specialists, and the availability of structured patient education.31,43,46,54,55 Future studies should therefore explore the impact of advocacy groups and peer-support networks on knowledge, engagement, and participation in CRC prevention.
Methodological differences also contribute to observed disparities. Most studies used the CCKNOW questionnaire,40 which primarily assesses general IBD knowledge and includes only a single CRC-specific item. This likely underestimated awareness compared with self-designed, CRC-focused questionnaires, which more directly assessed disease-specific understanding and tended to yield higher estimates. In the 9 studies using tailored tools,39,42,44,52,55-57,59,60 patients demonstrated greater recognition of CRC risk. This highlights the need for targeted, validated instruments to measure awareness accurately and allow reliable cross-study and temporal comparisons. Several sociodemographic and clinical factors were associated with higher awareness, including longer disease duration, prior IBD-related hospitalizations, and membership of patient organisations.31,52,56,59 Some variation was also noted by IBD subtype, with UC linked to higher awareness in 2 studies.49,52 No consistent associations were found with age, sex, education level, or occupation. These findings suggest that repeated healthcare exposure and access to peer-support may enhance knowledge, whereas patients with shorter disease duration or limited health literacy remain at risk of low awareness.
Across countries, patients were frequently poorly informed about CRC risk factors, and self-perceived risk varied widely.40,55,57 Overestimation was common, for example, US patients in 2011 estimated a 56% lifetime CRC risk without colonoscopy,48 while Dutch patients in 2010 believed annual surveillance reduced risk to 13%.45 In the United Kingdom (2020), 71% of patients endorsed colonoscopy as preventive.57 While these findings indicate trust in surveillance, they also highlight a disconnect between perceptions and epidemiological estimates. Overestimation may exacerbate anxiety, whereas underestimation risks complacency. Levels of fear varied, reflecting the cultural context, healthcare experiences, and educational access.52,57,60 Moderate concern may encourage adherence, but excessive worry can harm quality of life, and minimal concern may reduce engagement with surveillance.
Awareness of screening was limited.39,44 Most patients recognized colonoscopy as the preferred modality but had poor knowledge of the recommended initiation time, and attitudes were mixed. Concerns centered on bowel preparation, discomfort, and procedural risks.34,59 Only 3 studies explicitly assessed willingness to undergo colonoscopy, reporting that just over half of patients would proceed.39,59,60 Over time, awareness and acceptance appear to have improved, particularly in Europe and the United Kingdom.52,55,59 However, uncertainty about optimal timing persists, suggesting that patients may value of the test but remain unclear about when to begin surveillance.52,55 Differences across countries and time likely reflect variations in healthcare practices, patient education initiatives, and access to specialist care. Education targeting both the rationale for and timing of surveillance may reduce apprehension, improve willingness, and enhance adherence.
Knowledge of dysplasia management was poor, with most patients preferring to avoid surgery due to fears of stoma formation, serious infections, or post–operative complications. Cancer risk levels, whether 10% or 20%, did not consistently influence willingness to undergo colectomy, indicating that perceived surgical risks outweighed the threat of malignancy.45,52,55,60 Only 2 studies explored shared decision-making, but both reported strong patient support for collective management,50,57 highlighting the need for patient-centered discussions around dysplasia treatment.
The role of healthcare providers was suboptimal. Many patients reported having received inadequate information about CRC risk and treatment options, highlighting persistent communication gaps. While patients in the United States and Australia (2015) strongly favored shared decision-making (87%),50 recent UK studies (2023) found that up to half had never discussed CRC risk with their clinician, and many were unaware of surveillance.59,60 When dysplasia was discussed, fewer than half perceived decisions as shared.57 These findings suggest temporal and geographical contrasts but consistently emphasize the importance of improving patient–clinician dialogue and tailoring education to patient needs.
This review has several limitations. Only 3 databases were searched, which may have led to missed studies, although this was partially mitigated by grey literature and reference list searches. Non–English language studies were excluded, which may have further limited comprehensiveness. Most included studies were of medium quality and vulnerable to selection bias, while non–response bias was rarely reported. Conference abstracts were included to reduce publication bias and reflect emerging data, potentially for under-represented regions, but their methodological limitations must be acknowledged.
Heterogeneity in knowledge assessment tools, from validated instruments such as CCKNOW to self-designed questionnaires, posed challenges for aggregation and comparison. Temporal changes in colectomy practice, CRC incidence in IBD, and evolving surveillance guidelines may have further influenced awareness, warranting caution in cross-study comparisons. The review did not assess therapy choices beyond colectomy, highlighting an additional research gap.
The review did not specifically assess studies examining patients’ IBD therapy choices over time aimed at reducing CRC risk. Related domains, such as awareness of colectomy for dysplasia and patients’ willingness, preferences, and concerns, were evaluated, but this gap highlights the need for future research directly exploring therapy decisions for CRC risk reduction.
Despite these limitations, the qualitative synthesis allowed meaningful cross-country and temporal comparisons. The findings highlight gradual improvements in screening acceptance but persistent gaps in communication and dysplasia knowledge, identifying priorities for enhancing CRC prevention strategies in IBD.
This review identified limited but heterogeneous literature on IBD patients’ awareness of CRC and its management, with substantial variation across countries and time periods. Overall, awareness was moderate, but no clear global trend toward improvement was evident. Certain high-income countries, including the United Kingdom, Australia, United States, France, Korea, and Portugal, reported relatively higher awareness in both earlier (1996-2009)39,40,42,44 and more recent studies (2015-2023),49,51,52,56,58-60 suggesting that some healthcare systems may have successfully integrated CRC risk education into routine IBD care. This improvement may partly reflect the role of patient advocacy groups such as Crohn’s & Colitis UK61 and the Crohn’s & Colitis Foundation,62 which provide educational resources, promote patient engagement, and facilitate access to specialist care. In contrast, persistently low awareness in Iran, Sri Lanka, Italy, Chile, and Romania highlights geographic disparities, likely reflecting differences in healthcare infrastructure, access to gastroenterology specialists, and the availability of structured patient education.31,43,46,54,55 Future studies should therefore explore the impact of advocacy groups and peer-support networks on knowledge, engagement, and participation in CRC prevention.
Methodological differences also contribute to observed disparities. Most studies used the CCKNOW questionnaire,40 which primarily assesses general IBD knowledge and includes only a single CRC-specific item. This likely underestimated awareness compared with self-designed, CRC-focused questionnaires, which more directly assessed disease-specific understanding and tended to yield higher estimates. In the 9 studies using tailored tools,39,42,44,52,55-57,59,60 patients demonstrated greater recognition of CRC risk. This highlights the need for targeted, validated instruments to measure awareness accurately and allow reliable cross-study and temporal comparisons. Several sociodemographic and clinical factors were associated with higher awareness, including longer disease duration, prior IBD-related hospitalizations, and membership of patient organisations.31,52,56,59 Some variation was also noted by IBD subtype, with UC linked to higher awareness in 2 studies.49,52 No consistent associations were found with age, sex, education level, or occupation. These findings suggest that repeated healthcare exposure and access to peer-support may enhance knowledge, whereas patients with shorter disease duration or limited health literacy remain at risk of low awareness.
Across countries, patients were frequently poorly informed about CRC risk factors, and self-perceived risk varied widely.40,55,57 Overestimation was common, for example, US patients in 2011 estimated a 56% lifetime CRC risk without colonoscopy,48 while Dutch patients in 2010 believed annual surveillance reduced risk to 13%.45 In the United Kingdom (2020), 71% of patients endorsed colonoscopy as preventive.57 While these findings indicate trust in surveillance, they also highlight a disconnect between perceptions and epidemiological estimates. Overestimation may exacerbate anxiety, whereas underestimation risks complacency. Levels of fear varied, reflecting the cultural context, healthcare experiences, and educational access.52,57,60 Moderate concern may encourage adherence, but excessive worry can harm quality of life, and minimal concern may reduce engagement with surveillance.
Awareness of screening was limited.39,44 Most patients recognized colonoscopy as the preferred modality but had poor knowledge of the recommended initiation time, and attitudes were mixed. Concerns centered on bowel preparation, discomfort, and procedural risks.34,59 Only 3 studies explicitly assessed willingness to undergo colonoscopy, reporting that just over half of patients would proceed.39,59,60 Over time, awareness and acceptance appear to have improved, particularly in Europe and the United Kingdom.52,55,59 However, uncertainty about optimal timing persists, suggesting that patients may value of the test but remain unclear about when to begin surveillance.52,55 Differences across countries and time likely reflect variations in healthcare practices, patient education initiatives, and access to specialist care. Education targeting both the rationale for and timing of surveillance may reduce apprehension, improve willingness, and enhance adherence.
Knowledge of dysplasia management was poor, with most patients preferring to avoid surgery due to fears of stoma formation, serious infections, or post–operative complications. Cancer risk levels, whether 10% or 20%, did not consistently influence willingness to undergo colectomy, indicating that perceived surgical risks outweighed the threat of malignancy.45,52,55,60 Only 2 studies explored shared decision-making, but both reported strong patient support for collective management,50,57 highlighting the need for patient-centered discussions around dysplasia treatment.
The role of healthcare providers was suboptimal. Many patients reported having received inadequate information about CRC risk and treatment options, highlighting persistent communication gaps. While patients in the United States and Australia (2015) strongly favored shared decision-making (87%),50 recent UK studies (2023) found that up to half had never discussed CRC risk with their clinician, and many were unaware of surveillance.59,60 When dysplasia was discussed, fewer than half perceived decisions as shared.57 These findings suggest temporal and geographical contrasts but consistently emphasize the importance of improving patient–clinician dialogue and tailoring education to patient needs.
This review has several limitations. Only 3 databases were searched, which may have led to missed studies, although this was partially mitigated by grey literature and reference list searches. Non–English language studies were excluded, which may have further limited comprehensiveness. Most included studies were of medium quality and vulnerable to selection bias, while non–response bias was rarely reported. Conference abstracts were included to reduce publication bias and reflect emerging data, potentially for under-represented regions, but their methodological limitations must be acknowledged.
Heterogeneity in knowledge assessment tools, from validated instruments such as CCKNOW to self-designed questionnaires, posed challenges for aggregation and comparison. Temporal changes in colectomy practice, CRC incidence in IBD, and evolving surveillance guidelines may have further influenced awareness, warranting caution in cross-study comparisons. The review did not assess therapy choices beyond colectomy, highlighting an additional research gap.
The review did not specifically assess studies examining patients’ IBD therapy choices over time aimed at reducing CRC risk. Related domains, such as awareness of colectomy for dysplasia and patients’ willingness, preferences, and concerns, were evaluated, but this gap highlights the need for future research directly exploring therapy decisions for CRC risk reduction.
Despite these limitations, the qualitative synthesis allowed meaningful cross-country and temporal comparisons. The findings highlight gradual improvements in screening acceptance but persistent gaps in communication and dysplasia knowledge, identifying priorities for enhancing CRC prevention strategies in IBD.
Conclusion and recommendations
Conclusion and recommendations
Evidence on IBD patients’ awareness of CRC risk and its management remains limited and heterogeneous, preventing definitive conclusions about overall knowledge and educational needs. Addressing this gap is essential to guide interventions that improve understanding, promote adherence to surveillance and preventive strategies, and reduce CRC-related morbidity and mortality.
Future research should prioritize the development and use of standardized, validated tools specifically designed to assess CRC knowledge in IBD, allowing robust cross-study and temporal comparisons. The role of patient advocacy organizations, particularly in the United States, United Kingdom, and Europe, should be further examined, as they likely contribute to improved awareness and engagement. Similarly, the role of healthcare providers in supporting patient education and shared decision-making requires closer investigation.
Large-scale international surveys, ideally led by organizations such as the World Gastroenterology Organization and employing validated questionnaires, could establish global benchmarks, identify regional disparities, and inform tailored educational strategies to enhance CRC knowledge and preventive care in people living with IBD.
Evidence on IBD patients’ awareness of CRC risk and its management remains limited and heterogeneous, preventing definitive conclusions about overall knowledge and educational needs. Addressing this gap is essential to guide interventions that improve understanding, promote adherence to surveillance and preventive strategies, and reduce CRC-related morbidity and mortality.
Future research should prioritize the development and use of standardized, validated tools specifically designed to assess CRC knowledge in IBD, allowing robust cross-study and temporal comparisons. The role of patient advocacy organizations, particularly in the United States, United Kingdom, and Europe, should be further examined, as they likely contribute to improved awareness and engagement. Similarly, the role of healthcare providers in supporting patient education and shared decision-making requires closer investigation.
Large-scale international surveys, ideally led by organizations such as the World Gastroenterology Organization and employing validated questionnaires, could establish global benchmarks, identify regional disparities, and inform tailored educational strategies to enhance CRC knowledge and preventive care in people living with IBD.
Supplementary Material
Supplementary Material
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otag001_Supplementary_Data
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