Inflammatory Bowel Disease Knowledge Research Articles

Inflammatory bowel disease training assessment of gastroenterology fellows in Saudi Arabia.

Recent advancement and complexity in the management of inflammatory bowel disease (IBD) has made it challenging for gastroenterology (GI) fellows to obtain competency and confidence in managing the complex IBD patient. We aimed to evaluate the confidence and training in IBD among GI fellows in Saudi Arabia. We conducted an electronic, voluntary, and anonymous multicenter survey study of GI fellows in Saudi Arabia, from 1/5/2023 to 1/9/2023. The survey evaluated the fellows' confidence level in IBD management, methods of training received, and the amount of additional training desired in 20 core IBD domains. GI fellows' preferred learning method was also evaluated. A total of 65 GI fellows responded to the survey. In the entire cohort, >50% of fellows reported low confidence in 7 out of 20 IBD management domains, which included 71% in managing j-pouch disorders, 67% in managing the elderly/frail patient with IBD, 60% in managing extraintestinal manifestations, 57% in recommending preventative health services, and 54% in counseling patients on small molecules. Receiving >4 IBD didactic sessions per year was significantly associated with high confidence in managing j-pouch disorders (44.4% vs 13.3%, P = 0.05) and managing the elderly/frail patient with IBD (86.7% vs 50.0%, P = 0.03). Doing an external rotation to expand IBD knowledge was associated with high confidence in managing the elderly/frail patient with IBD (100% vs 26.7%, P = 0.01). Many GI fellows lacked confidence and training in key domains of IBD management. Enhancing IBD exposure with didactics and external rotations improved fellows' confidence in specific domains.

Awareness of inflammatory bowel disease among the general population of Al-Baha region, Saudi Arabia.

Inflammatory bowel disease (IBD) is a chronic gastrointestinal disorder that encompasses Crohn's disease (CD) and ulcerative colitis (UC). IBD can be debilitating and has severe effects on the quality of life of the affected individuals. However, despite the increasing frequency of IBD around the world, the general population lacks knowledge and comprehension of this illness. The aim of this study was to determine the level of knowledge and awareness of IBD among the general population in Al-Baha region, Saudi Arabia. We carried out a cross-sectional study using an online self-administered validated questionnaire. The questionnaire included demographic questions, as well as questions regarding knowledge and awareness of IBD. The study included 473 participants selected by convenience random sampling with equal chance of selection. Approximately 61% of the participants had never heard about IBD, and for those who did, social media was the most common source of information (40.6%). Also, the majority of participants had limited knowledge about the different types of IBD (74%), their symptoms, and long-term effects. Women had a significantly higher level of adequate knowledge (12.1%) compared to men (4.8%) (P = 0.011). The study demonstrated a substantial lack of understanding and awareness of IBD among the general population in Al-Baha region, notably regarding the different types of IBD, their symptoms, and their long-term effects. The study underscores the need for further educational initiatives and resources to raise public knowledge and comprehension of IBD globally.

Inadequate pregnancy-specific knowledge among patients with inflammatory bowel disease: A multicenter survey in China.

The perceptions and attitudes of inflammatory bowel disease (IBD) patients towards pregnancy may affect their fertility plan and disease progression. We performed a nationwide multicenter survey of pregnancy-related knowledge among gastroenterologists and IBD patients in China to investigate whether specific educational interventions could improve their understanding and broadly influence fertility plan. A cross-sectional questionnaire regarding pregnancy-specific knowledge was carried out among 63 IBD centers in China. Questionnaires were collected from 185 physicians and 609 patients. The patients then received education regarding pregnancy during IBD and filled in the same questionnaire again. Their knowledge regarding pregnancy during IBD was compared before and after education. Compared to physicians, patients' knowledge regarding fertility (39.1% vs 70.8%), imaging examinations (22.8% vs 72.4%), endoscopy performed during pregnancy (19.9% vs 71.4%), and vaccination for infants (16.6% vs 46.5%) was significantly more limited (all P < 0.001). There was a lack of knowledge among gastroenterologists regarding the delivery mode (36.8%), medications (36.8%), and emergency surgery (26.5%) during pregnancy in patients with IBD. After education, the patients showed significant improvement in knowledge regarding medications (26.7% vs 51.7%), fertility (45.0% vs 63.3%), heritability (40.0% vs 58.3%), indications for emergency surgery (15.0% vs 53.3%), imaging examinations during pregnancy (20.0% vs 40.0%), and vaccinations for infants (26.7% vs 45.0%) (all P < 0.05). Pregnancy-specific IBD knowledge needs to be improved among certain gastroenterologists and patients in China. Educational interventions can partially improve the knowledge levels of the patients.

The 2023 Impact of Inflammatory Bowel Disease in Canada: Access to and Models of Care.

Rising compounding prevalence of inflammatory bowel disease (IBD) (Kaplan GG, Windsor JW. The four epidemiological stages in the global evolution of inflammatory bowel disease. Nat Rev Gastroenterol Hepatol. 2021;18:56-66.) and pandemic-exacerbated health system resource limitations have resulted in significant variability in access to high-quality, evidence-based, person-centered specialty care for Canadians living with IBD. Individuals with IBD have identified long wait times, gaps in biopsychosocial care, treatment and travel expenses, and geographic and provider variation in IBD specialty care and knowledge as some of the key barriers to access. Care delivered within integrated models of care (IMC) has shown promise related to impact on disease-related outcomes and quality of life. However, access to these models is limited within the Canadian healthcare systems and much remains to be learned about the most appropriate IMC team composition and roles. Although eHealth technologies have been leveraged to overcome some access challenges since COVID-19, more research is needed to understand how best to integrate eHealth modalities (i.e., video or telephone visits) into routine IBD care. Many individuals with IBD are satisfied with these eHealth modalities. However, not all disease assessment and monitoring can be achieved through virtual modalities. The need for access to person-centered, objective disease monitoring strategies, inclusive of point of care intestinal ultrasound, is more pressing than ever given pandemic-exacerbated restrictions in access to endoscopy and cross-sectional imaging. Supporting learning healthcare systems for IBD and research relating to the strategic use of innovative and integrative implementation strategies for evidence-based IBD care interventions are greatly needed. Data derived from this research will be essential to appropriately allocating scarce resources aimed at improving person-centred access to cost-effective IBD care.

Inflammatory bowel disease associated knowledge in South Indian populations: rational Study.

The pivotal of the study was to compare the effectiveness of education in disease-associated knowledge of Inflammatory Bowel Disease (IBD) patients between pre-test and post-test using the IBD-KNOW questionnaire and patient educational resources. This study used a patient proforma and IBD- KNOW questionnaire to perform the study prospectively by interviewing method. The patient selection was based on inclusion and exclusion criteria by convenient sampling technique from November 2018 to July 2019 at a multispecialty hospital. Knowledge scores and inter-item correlation were calculated between the pre-test and post-test by R Programming software with p<0.05. Among 40 patients with IBD diagnosis, the baseline sociodemographic characteristics were recorded. The response rate of IBD knowledge between the pre-test and post-test resulted in significant differences with varying scales but the response rate was lesser in the domains of management and pregnancy-based questions in the pre-test and post-test. Recently there was a swift in IBD incidence, this may be improved by affording suitable patient education and counseling for further knowledge level in managing the disease by coping strategy. On comparison between the pre-test and post-test, this study recommends innovative educational methods to enable continuing education for chronic disease which can be easily accessible and reliable for IBD patients.

Development and validation of a questionnaire to test Chinese patients’ knowledge of inflammatory bowel disease

A good understanding of a disease facilitates patient-centered management. We aimed to develop and validate a questionnaire to assess inflammatory bowel disease (IBD)-related knowledge and analyze the factors affecting patients’ knowledge of IBD. We invited 15 experts to develop and modify an IBD knowledge questionnaires and 709 patients to test the reliability and validity of the questionnaires as well as analyze the factors related to the disease knowledge of patients with IBD. In internal consistency, Cronbach’s α coefficients for the common items, ulcerative colitis (UC), and Crohn’s disease (CD) knowledge questionnaires were 0.886, 0.89, and 0.886, respectively. In cross-item consistency, Spearman-Brown split coefficients of the common items, UC, and CD knowledge questionnaires were 0.843, 0.812, and 0.812, respectively. In time consistency, the test–retest reliability ICC was 0.862 (P < 0.001). The correlation between researcher scores, IBD-KNOW scores, and the original questionnaire scores was greater than 0.7 (P < 0.001). Multiple linear regression demonstrated that the factors, including disease type, age, body mass index, education level, income, treatment cost, duration of disease, and frequency of visits, affected the IBD patients’ knowledge of the disease (P < 0.05). The IBD knowledge questionnaires had good reliability and validity and, therefore, can be used to assess patient knowledge of the disease.

Italian Cross-Cultural Adaptation of a Knowledge Assessment Tool (IBD-KID2) for Children with Inflammatory Bowel Disease

Background: For children with inflammatory bowel disease (IBD), understanding their condition may lead to better outcomes. Knowledge assessment is imperative to identify where education may be required. An IBD knowledge assessment tool (IBD-KID2) is available in English; the aim of this study was to translate IBD-KID2 in to Italian and assess its validity/reliability among children with IBD. Methods: IBD-KID2 has fifteen items, scoring one point per correct answer. IBD-KID2 items were assessed for cultural comprehension/relevance by Italian gastroenterologists using a content validity index; those items with a maximum score proportion &lt;0.78 were reviewed. IBD-KID2 was then translated using ‘forward–backward’ process and reviewed for content/meaning. A prospective study among Italian children with IBD enabled score comparisons with established populations (z test), and reliability was assessed using test–retest completion (Pearson correlation (r), paired t-test). Results: Twenty-five children participated: 16 (64%) male, mean age 14.9 years (SD2.4), Crohn’s disease 13 (52%). The mean IBD-KID2 score was 8.8 (SD2.8), with no association with independent variables. Test–retest showed strong correlation between scores (r = 0.78, p &lt; 0.001), with no mean difference (p = 0.39). Comparison with other pediatric IBD populations (NZ/Australia/Canada) showed no score difference (p = 0.62, CI −0.9 to 1.5). Conclusions: The translation of IBD-KID2 to Italian used a rigorous methodology. Scores showed the translated tool has equivalence and generalizability to Italian children with IBD.

N01 Using Item Response Theory to improve the efficiency of the Crohn and Colitis Knowledge score for patients with Inflammatory Bowel Disease

Abstract Background Patient knowledge varies widely in inflammatory bowel disease (IBD), but knowledge of the disease and its management is essential for patients with chronic disorders and can improve health-related quality of life, coping ability, self-care skills, and adherence and can positively impact several outcomes including disease activity and direct and indirect costs. To assess patients’ knowledge is available the Crohn’s and Colitis Knowledge Score (CCKNOW), but can be biased by subjects’ abilities, attitudes, or other latent traits not considered in its validation process. The purpose of this study was to reassess the index developed for measuring IBD patients’ knowledge using the Item Response Theory (IRT). Methods IBD patients with a recent (&amp;lt;18 months) diagnosis, stable therapy, and no previous IBD-related surgery have been asked to answer the 30 items described in the validation of the CCKNOW questionnaire. Measures of between-item relationships (scalability) and unidimensionality (single major trait) were estimated prior to applying a 2-PL logistic IRT model across all 30 items. To evaluate a questionnaire with improved item information, low discriminatory items were removed by order of discrimination value, with the lowest discriminating item&amp;lt;1.7 removed before the 2-PL model was re-estimated with the remaining items. The process was then repeated twice to remove poorly discriminating and inefficient scaling items. The difficulty parameters have also been estimated in the 2-PL logistic IRT model. Cronbach’s alpha (α) was used as a guide to measuring whole-scale reliability. Results 49 patients (17 females, 21 Crohn’s Disease) were enrolled, with a median (IQR) age of 37 (29-47) years, a median disease duration of 334 (212-426) days and a median number of outpatients visit performed of 1 (1-3). Only 6 subjects involved in the study were graduated; the median level of health-related quality of life (S-IBDQ) was 47,7 (30,3-60,9). About 50% of subjects in both groups were in disease remission. Based on discrimination ability, item number 4, 10, 11, 22, 29, and 30 could be excluded because demonstrated a discrimination ability below 1.7. The Cronbach’s alpha for the 24 items questionnaire indicates a suitable internal consistency (α = 0.84). Based on difficulty parameters, the most difficult items were the 25th and 14th, and the easiest were the 19th and 21st. Conclusion This is the first study systematically to interrogate a commonly used index for patients’ IBD knowledge, using robust psychometric and statistical methodologies. IRT is a valid and robust psychometric methodology, which may be used to analyse patient questionnaires. The revised CCKNOW questionnaire provides optimum trait information.

Prevalence and predictors of medication non-adherence in children with inflammatory bowel disease in China: A cross-sectional study.

Background: Non-adherence to physician-prescribed medications, especially oral medications, is common in children with inflammatory bowel disease (IBD), and medication non-adherence is associated with poorer outcomes in IBD. Therefore, understanding and improving medication adherence in children with IBD is critical for optimizing treatment and improving treatment outcomes. Despite the relatively high prevalence of IBD in children in China, to date, very little is known about medication adherence in these patients. Objective: The aim of this study was to investigate the prevalence of medication non-adherence and its risk factors in children with IBD in China to provide a basis for developing adherence improvement strategies. Methods: A cross-sectional design was employed. Children (aged <18years) with IBD who visited the Children's Hospital, Zhejiang University School of Medicine, from September 2020 to December 2021 were included. Data were collected by a general information questionnaire, the 4-item Medication Adherence Report Scale (MARS-4) and Crohn's and Colitis Knowledge (CCKNOW) questionnaire. Subsequently, forward stepwise binary logistic regression analysis was performed to determine independent predictors of medication non-adherence. Results: A total of 119children were included in this study. The results showed that 33 (27.73%) and 86 (72.27%) children had poor and good medication adherence, respectively. Of these, 83 (69.75%) had forgotten to take their medications sometimes, often, or always. On binary logistic regression, we found that the incidence of medication non-adherence in children with IBD course of 3years and above [OR 4.82 (95%CI: 1.47-15.88); p = 0.01] was significantly higher than that in children with course of 3 months to 1year, whereas children with higher parental CCKNOW scores [OR 0.77 (95%CI: 0.67-0.88); p = 0.00] had significantly lower incidence of medication non-adherence than those with lower parental CCKNOW scores, and the results of the correlation between parental knowledge scores of the four categories and children's medication adherence showed that drug knowledge scores (r = 0.36, p < 0.00) and complication knowledge scores (r = 0.24, p = 0.01) were positively correlated with medication adherence. Conclusion: Poor medication adherence in children with IBD in China was common, and forgetting to take medication was the main barrier. Longer disease duration (3years and above) in children could act as a risk factor for medication adherence, whereas higher level of parental knowledge about IBD could act as a protective factor, and one interesting novel finding was that the level of parental knowledge about drug and complication were significantly correlated with medication adherence in children with IBD. Our results may inform on the design and implementation of medication adherence interventions for children with IBD.

Experiences of pregnancy for women living with inflammatory bowel disease: a systematic review

Background: While women living with inflammatory bowel disease (IBD) have a similar fertility rate to the general population, they are at increased risk of pregnancy complications, and they are considered to have high-risk pregnancies requiring multidisciplinary care. Aims: A systematic literature review was conducted to investigate the experiences of pregnancy among women with IBD. Methods: The search terms ulcerative colitis, Crohn's disease, inflammatory bowel disease, IBD, antenatal care, pregnancy, experience, perception and perspectives (and combinations of these words using Boolean operators) were entered into the selected electronic databases. Findings: Of 1197 articles retrieved, 42 were full-text screened. Five articles were included, with data extraction by two independent reviewers. Five key themes were generated: timing of diagnosis; translation of healthcare practitioner knowledge of IBD and pregnancy into meaningful information; perceptions about IBD medication; impact of disease activity; and concerns about IBD and pregnancy. Conclusion: Insight into what shaped experiences of pregnancy was gained, with the small numbers of studies also highlighting the lack of research in this area. Further research in this area is recommended.

Primary care pharmacists’ knowledge and perception of Inflammatory Bowel Disease: a cross-sectional study in Australia.

Purpose: Inflammatory bowel disease (IBD) management is complex and challenging, and therefore, requires a multidisciplinary approach. Whilst pharmacists may play a key role as the first point of contact for patients with initial symptoms or disease relapse, there is scant literature on pharmacists’ knowledge in IBD management. We conducted a survey to explore pharmacists’ knowledge and their perception of pharmacists and other healthcare professionals’ roles in managing patients with IBD.Design and Methodology: An online survey was distributed to pharmacists through professional organisations. The survey included questions about demographic information, concepts related to IBD management and the roles of pharmacists and healthcare professionals in managing patients with IBD.Findings: Fifty two respondents completed the survey. The overall knowledge score for the majority of respondents was categorised as ‘low’ (25-50%) to ‘average’ (51-75%). IBD concept that demonstrated the highest level of accuracy in knowledge scores among pharmacists was the importance of vaccination in IBD (94.2%). Pharmacists who had exposure to patients with IBD demonstrated better knowledge scores compared to those who did not have any exposure to IBD patients in their practice (p = 0.005). Furthermore, General Practitioners (GPs) were perceived as the key care providers to IBD patients, whilst pharmacists considered themselves as important in providing medication related information to patients. Conclusion: This study indicated that pharmacists’ knowledge of IBD and its’ management was suboptimal, but with education and training there are opportunities for pharmacists to play a more active role in managing patients with IBD.

Managing Inflammatory Bowel Disease in Pregnancy: Health Care Professionals' Involvement, Knowledge, and Decision Making.

The management of pregnant women with inflammatory bowel disease (IBD) is complex. We aimed to assess health care professionals' (HCPs) theoretical and applied knowledge of pregnancy-related IBD issues. A cross-sectional international survey was distributed to HCPs providing IBD care between October 2020 and March 2021. Knowledge was assessed using the validated Crohn's and Colitis Pregnancy Knowledge Score (CCPKnow; range, 0-17). Decision-making was assessed by free text responses to 3 clinical scenarios scored against predetermined scoring criteria (maximum score 70). Among 81 participants, median CCPKnow score was 16 (range, 8-17), and median total scenario score was 29 (range, 9-51). Health care professionals who treat >10 IBD patients per week (CCPKnow P = .03; scenarios P = .003) and are more regularly involved in pregnancy care (CCPKnow P = .005; scenarios P = .005) had significantly better scores. Although CCPKnow scoring was consistently high (median score ≥15) across all groups, consultants scored better than trainees and IBD nurses (P = .008 and P = .031). Median scenario scores were higher for consultants (32) and IBD nurses (33) compared with trainees (24; P = .018 and P = .022). There was a significant positive correlation between caring for greater numbers of pregnant IBD patients and higher CCPKnow (P = .001, r = .358) and scenario scores (P = .001, r = .377). There was a modest correlation between CCPKnow and scenario scores (r = .356; P < 0.001). Despite "good" theoretical pregnancy-related IBD knowledge as assessed by CCPKnow, applied knowledge in the scenarios was less consistent. There is need for further HCP education and clinical experience to achieve optimal standardized care for IBD in pregnancy.

A Short Knowledge Assessment Tool Is Valid and Acceptable for Adults with Inflammatory Bowel Disease

BackgroundFor people with inflammatory bowel disease, validated knowledge questionnaires are valuable to identify gaps in understanding and explore the impact on disease variables.AimsThe aim of this study was to validate the short knowledge questionnaire Inflammatory Bowel Disease Knowledge Inventory Device 2, known as IBD-KID2, for use with adults with inflammatory bowel disease.MethodsConcurrent validity of IBD-KID2 was assessed by comparing scores with those achieved on the Crohn’s and Colitis Knowledge Score (CCKNOW). IBD-KID2 reliability was assessed with test–retest completion at two time points, generalizability assessed by comparing IBD-KID2 cohort scores at different recruitment centres, and acceptability assessed using participant survey.ResultsSeventy-five adults with inflammatory bowel disease completed the study. The mean percentage scores achieved on the IBD-KID2 and CCKNOW were 72.8% (SD 16.0) and 49.7% (SD 18.2), respectively. There was a significant correlation between IBD-KID2 and CCKNOW scores (R 0.573, P < 0.005), confirming concurrent validity. IBD-KID2 reliability was confirmed as no significant difference was seen between scores at test and retest (mean difference −0.2, P = 0.92). Generalizability was established as no significant score difference was seen between recruitment centres after controlling for population differences. The acceptability survey showed that 49 (69%) participants preferred IBD-KID2 to the CCKNOW, 60 (85%) found the IBD-KID2 easier to complete, and 38 (53%) considered the CCKNOW as most suitable for adults.ConclusionsIBD-KID2 is a valid, reliable, and generalizable tool for measuring knowledge in adults with inflammatory bowel disease with good acceptability. IBD-KID2 is easy and quick to complete, hence limiting respondent burden.

Impact of inflammatory bowel disease on partners: a qualitative study

Background:Extensive studies have documented the impacts of inflammatory bowel disease (IBD) on patient quality of life, but this study addresses the gap concerning IBD outcomes for the family members of adult IBD patients.Aims:To explore the lived experience of IBD patients and their family members regarding impacts of IBD on family members and their coping strategies.Methods:Semi-structured, in-depth, online interviews were held via Skype, Microsoft Teams and Zoom from February to June 2020, with 12 purposively selected participants, comprising six IBD patients with their six partners. Interviews were audio-recorded and transcribed verbatim, for inductive thematic data analysis.Results:Four main themes emerged during the analysis under the central theme ‘our relationship with IBD, for better or worse’. The theme ‘our relationship’ revealed the impact of IBD on intimate relationships, family planning, role change as partner and carer, and the importance of honest communication. IBD also affected wider relationships with family, children and social life, but teamwork could mediate negative impacts on relationships. Living in constant fear and guilt impacted on emotional wellbeing. Humour and knowledge of IBD reduced negative impacts. IBD had impacts on everyday life (diet, finances and travel) for both patients and partners. Planning for uncertain situations was helpful to reduce restrictions.Conclusions:There are wide-ranging implications for healthcare providers (gastroenterologists, GPs and IBD nurses), social care professionals (psychologists and social workers), family therapists and researchers who could incorporate a bio-psycho-social approach to working with patients with IBD to improve services for individuals who have IBD and their partners and families.

N09 Disease knowledge and quality of life perception in Inflammatory Bowel Disease: a randomised controlled trial

Abstract Background Inflammatory bowel diseases (IBD) negatively impact daily activities and perceived quality of life (QoL); good information of IBD patients on disease, diagnostics, and treatments may change this perception, even if the evidence on this topic is lacking; moreover, too much information overwhelms the patient, which inhibits both understanding and recall. No studies are available on the impact produced by different techniques or amounts of information provided. This study aimed at assessing the impact of essential, patient-centred information on the level of knowledge and on the QoL in IBD patients. Methods Patients with a recent diagnosis of IBD in follow-up at a third-level referral centre were randomly assigned to two different interventions, the “standard of care” information package or the experimental one. The latter is a synthetic, standardised, and structured informative intervention developed with a “less is more” approach in collaboration with local IBD patients’ associations. The knowledge level was measured with the Crohn’s and Colitis Knowledge score – CCKNOW – (Eaden, Abrams, and Mayberry, 1999), while the perception of QoL with the Short Inflammatory Bowel Disease Quality of life - S-IBDQ – (Irvine, Zhou, and Thompson, 1996). Disease activity was assessed with the Modified Trulove and Witt Severity Index - MTWSI - (Lichtiger et al., 1994) in ulcerative colitis and the Harvey Bradshaw Index – HBI – (Harvey and Bradshaw, 1980) in Crohn’s disease.CCKNOW, S-IBDQ and MTWSI or HBI were administered at baseline and two months after the intervention. Results 68 patients were assessed for study participation and 49 were enrolled. At baseline, the patients’ level of knowledge was very low, with correct answers ranging from 2 to 50% in different domains, positively correlated with the patient’s instruction level (ρ = 0.40; p&amp;lt;0.01) and negatively with age (ρ = -0.30; p&amp;lt;0.05). QoL, disease activity, gender, disease duration, type of IBD, number of outpatient visits, and hospital admissions were not related to the level of knowledge. Two months after the administration of the educational intervention, patients in the experimental group showed a higher level of knowledge than the control group (p&amp;lt;0.01) and better perception of QoL (p&amp;lt;0.01), while disease activity remained stable in both groups. Conclusion Increasing patients’ knowledge improves QoL and an educational intervention with less information performed shortly after diagnosis significantly improves the patient’s knowledge and QoL, regardless of disease activity.

Medication adherence in women with IBD of childbearing age likely associated with disease knowledge

Medication adherence in inflammatory bowel disease (IBD) is crucial, particularly during pregnancy. Unplanned pregnancies are common; therefore, efforts to maximise adherence should not be restricted to pregnant women. We aimed to assess medication adherence in women with IBD of childbearing age, regardless of their reproduction plans. We performed a multi-centre pilot questionnaire study of women with IBD age 18-45 years. Survey questions included patient demographics, disease history, and validated assessments of IBD and pregnancy knowledge, medication adherence and quality of life. The primary outcome was rates and predictors of medication adherence. In all, 72 women [58.3% Crohn's disease (CD) and 37.5% ulcerative colitis] completed the survey. The median patient age was 30 years [interquartile range (IQR): 24.8-36.0) and 37.5% had children. Medication adherence was high (84%; median Medication Adherence Report Scale: 19.0/20; IQR: 17.0-20.0). Knowledge scores were adequate for both the Crohn's and Colitis Knowledge (CCKnow; median: 15.5/30; IQR: 12.3-18.0) and Crohn's and Colitis Pregnancy Knowledge (CCPKnow; median: 8.0/17; IQR: 4.0-11.0). Disease knowledge was predictive of high medication adherence (CCPKnow: p = 0.02; CCKnow: p ⩽ 0.01). Higher adherence was significantly associated with a diagnosis of CD (p = 0.01), exposure to biological agents (p = 0.03) and immunomodulators (p = 0.04), childbearing after diagnosis with IBD (p = 0.03), and correctly understanding the importance of delivery modality (p = 0.02) and IBD activity in pregnancy (p = 0.01). Following dedicated education at the IBD clinic, medication adherence, disease-specific and pregnancy-specific knowledge in women with IBD of childbearing age tends to be high. Unplanned pregnancies are frequent; therefore, we should aim to maximise medication adherence in all women of childbearing age to optimise maternofoetal outcomes if unexpected pregnancies occur.

Women's Willingness to Accept Risks of Medication for Inflammatory Bowel Disease During Pregnancy.

Women with inflammatory bowel disease (IBD) face difficult decisions regarding treatment during pregnancy: while the majority of IBD medications are safe, there is substantial societal pressure to avoid exposures during pregnancy. However, discontinuation of IBD medications risks a disease flare occurring during pregnancy. This study quantified women's knowledge about pregnancy and IBD and their willingness to accept the risks of adverse pregnancy outcomes to avoid disease activity or medication use during pregnancy. Women with IBD recruited from four centers completed an online discrete-choice experiment stated-preference study including eight choice tasks and the Crohn's and Colitis Pregnancy Knowledge questionnaire. Random-parameters logit was used to estimate preferences for both the respondent personally and what the respondent thought most women would prefer. We also tested for systematically different preferences among individuals with different demographic and personal characteristics, including IBD knowledge. The primary outcome was the maximum acceptable risk of premature birth, birth defects, or miscarriage that women with IBD were willing to accept to avoid (1) taking an IBD medication or (2) having a disease flare during pregnancy. Among 230 respondents, women would accept, on average, up to a 4.9% chance of miscarriage to avoid a disease flare. On average, there were no statistically significant differences in women's preferences for continuing versus avoiding medication in the absence of a flare. However, prior understanding of IBD and pregnancy significantly affected preferences for IBD medication use during pregnancy: women with "poor knowledge" would accept up to a 6.4% chance of miscarriage to avoid IBD medication use during pregnancy, whereas women with "adequate knowledge" would accept up to a 5.1% chance of miscarriage in order to remain on their medication. Respondents' personal treatment preferences did not differ from their assessment of other women's preferences. Women with IBD demonstrated a strong preference for avoiding disease activity during pregnancy. Knowledge regarding pregnancy and IBD was a strong modifier of preferences for continuation of IBD medications during pregnancy. These findings point to an important opportunity for intervention to improve disease control through education to increase medication adherence and alleviate unnecessary fears about IBD medication use during pregnancy.

Current approach to hepatobiliary manifestations in inflammatory bowel disease.

Inflammatory bowel disease (IBD), including the two main subtypes - Crohn's disease (CD) and ulcerative colitis (UC) - has a wide range of extra-intestinal manifestations (EIMs) that are major causes of morbidity and disability. The following EIMs can be classified as IBD-associated: mucocutaneous, ocular, pulmonary, renal, genitourinary, hematological, neurological, psychiatric, cardiac and hepatobiliary. The latter include primary sclerosing cholangitis (PSC), cholelithiasis, IgG4 associated cholangiopathy (IAC), autoimmune hepatitis (AIH), non-alcoholic fatty liver disease (NAFLD), hepatitis B and C, and drug-induced hepatotoxicity. The aim of this review is to examine our current knowledge of IBD - associated hepatobiliary EIMs and their treatment.

Rotterdam Transition Test: A Valid Tool for Monitoring Disease Knowledge in Adolescents With Inflammatory Bowel Disease.

Disease knowledge is important in adolescents with inflammatory bowel disease (IBD) transitioning to adult care. We developed an IBD-specific knowledge questionnaire, the Rotterdam Transition Test (RTT), and aimed to validate this tool. This is a prospective longitudinal validation study. The RTT has 25 open questions on IBD, medication, lifestyle, and transition to adult care. A scoring model was developed, and inter-rater agreement was assessed. Using a Rasch model, we determined the difficulty and performance of the questions. Cronbach alpha was used to demonstrate reliability. Patient factors (age, disease, education, medication use, illness acceptance, and independence) were correlated to RTT score. A total of 207 RTTs were evaluated in 111 adolescent IBD patients. The scoring model showed a kappa score of >0.61 for all questions. Reliability with Cronbach alpha was good (0.81). Mean total result of the RTT was 58% (girls) and 55% (boys) of maximal score.The RTT discriminated well between the different levels of knowledge. Knowledge scores increased in patients who did repeated RTTs during the transition period. Male sex, low educational level, disease acceptance issues, and dependence on parents associated with a significantly lower total RTT score. Prednisone use within 3 months and treatment without biologics associated with significantly higher RTT scores. Disease activity was not a significant factor. The RTT is a reliable and valid tool to assess IBD knowledge. The RTT can be used to detect and discuss knowledge gaps in adolescents with IBD transitioning to adult healthcare.

Understanding the surgical experience for Black and White patients with inflammatory bowel disease (IBD): The importance of health literacy

BackgroundRacial/ethnic disparities in outcomes exist for patients with inflammatory bowel disease (IBD) undergoing surgery. The underlying mechanism(s) remain unclear and patient perspectives are needed. We therefore aimed to characterize the surgical experience for Black and White IBD patients using qualitative methods. MethodsPatients with IBD who had undergone surgery were recruited to same-race qualitative interviews. Semi-structured interviews explored barriers and facilitators to a positive or negative surgical experience. Transcripts were analyzed with NVivo 12 software. ResultsSix focus groups were conducted that included 10 Black and 17 White IBD participants. The mean age was 44.8 years (SD 13.2), 52% were male and 65% had Crohn's disease. Four themes emerged that most defined the surgical experience: the impact of the IBD diagnosis, the quality of provided information, disease management and the surgery itself. Within these themes, barriers to a positive surgical experience included inadequate personal knowledge of IBD, ineffective written and verbal communication, lack of a support system and complications after surgery. Both groups reported that information was provided inconsistently which led to unclear expectations of surgical outcomes. ConclusionsBlack and White patients with IBD have varied surgical experiences but all stressed the importance of accurate, trustworthy and understandable health information. These findings highlight the value of providing health literacy-sensitive care in surgery.