Gender Trends in Authorship of Gastroenterology Randomized Controlled Trial Literature.

INTRODUCTION: We describe female authorship trends in gastroenterology (GI) randomized controlled trial literature as a novel focus on gender bias in academic GI. METHODS: Using a systematic PubMed search, we extracted GI randomized controlled trial reports published from 2011 to 2022. We describe time trends in proportions of females among first and last authors overall and within GI subspecialties and high-impact journals. RESULTS: The proportion of females increased from 25.4% to 36.8% and from 14.3% to 24.8% among first and last authors, respectively. Smaller increases in female authorship occurred in most subgroups, although there were proportionately fewer females among authors in high-impact journals and advanced therapeutic endoscopy publications. DISCUSSION: Over the past decade, female authorship in GI RCT reports has increased. However, female representation, particularly among senior authors and in high-impact journals, remains significantly lower. Despite recent improvements, female still constitutes a minority of the authors of original GI RCTs.

Mental Health Experiences of Adolescents and Young Adults with Inflammatory Bowel Disease During Transition to Adult Care: A Qualitative Descriptive Study.

OBJECTIVE: To explore the mental health experiences of adolescents and young adults (AYA) with inflammatory bowel disease (IBD) enrolled in a randomized controlled trial evaluating the impact of a multimodal transition intervention. STUDY DESIGN: Virtual semistructured interviews were held with 21 AYA aged 16 through 18 years with IBD. Guided by qualitative description, interviews were digitally recorded, transcribed verbatim, and analyzed using an inductive approach to reflexive thematic analysis. RESULTS: Three themes were generated from the data: (1) a continuum of integration between IBD and personal identity in adolescence and young adulthood; (2) manifestations of the mind-gut connection among AYA with IBD; and (3) hopes and priorities for addressing mental health in IBD care. CONCLUSIONS: AYA with IBD endorsed the criticality of incorporating mental health discussions into routine care during the transition to adult care, given the co-occurrence of psychosocial stressors throughout this period. A series of factors promoting and hindering the integration of IBD into one's identity were identified and could be explored in clinical encounters.

Transition Readiness in Youth with Inflammatory Bowel Disease.

OBJECTIVES: To examine readiness of adolescents and young adults (AYAs) with inflammatory bowel disease (IBD) to transition to adult care. STUDY DESIGN: A cross-sectional multicenter study evaluating transition readiness in individuals with IBD 16-19 years old prospectively recruited from 8 Canadian IBD centers using the validated ON Taking Responsibility for Adolescent to Adult Care (ON TRAC) questionnaire. Secondary aims included (1) screening for depression and anxiety using the 8-item Personal Health Questionnaire Depression Scale and The Screen for Child Anxiety Related Emotional Disorders questionnaires, respectively; (2) evaluating the association between depression and anxiety with readiness and disease activity; and (3) subjectively evaluating AYA readiness based on physician and parent assessments. RESULTS: In total, 186 participants (139 adolescent, 47 young adult) were enrolled, mean age 17.4 years (SD, 0.87). ON TRAC scores determined that 26.6% of AYAs at pediatric and 40.4% at adult centers reached the threshold of readiness. On multivariable linear regression analysis age was positively (P = .001) and disease remission negatively (P = .03) associated with ON TRAC scores. No statistically significant differences were determined across centers. A significant percentage of AYAs reported moderate-to-severe depression (21.7%) and generalized anxiety (36%); however, neither were significantly associated with ON TRAC scores. Notably, physician and parental assessment of AYA readiness correlated poorly with ON TRAC scores (⍴ = 0.11, ⍴ = 0.24, respectively). CONCLUSIONS: Assessment of transition readiness in AYAs with IBD highlighted that a large proportion do not have adequate knowledge or behavior skills needed for transition to adult care. This study infers that readiness assessment tools are essential during transition to identify deficits in knowledge and behavior skills that could be specifically targeted by the youth, caregivers, and multidisciplinary team.

Impact of Disease Activity and Inflammatory Bowel Disease Subtype on Quality of Life in Preconception and Pregnant Patients.

BACKGROUND: Inflammatory bowel disease (IBD) and pregnancy both impact health-related quality of life (HRQoL). However, little is known about IBD-related HRQoL around pregnancy. AIMS: To assess the trajectory and predictors of HRQoL in preconception and pregnant patients with Crohn's disease (CD) and ulcerative colitis (UC). METHODS: Preconception and pregnant patients with IBD were followed prospectively from preconception to twelve months postpartum at a tertiary referral centre. Participants completed the Short IBD Questionnaire (SIBDQ) and were assessed for clinical disease activity (modified Harvey Bradshaw Index or partial Mayo score) and objective disease activity (C-reactive protein [CRP], fecal calprotectin [FCP]). RESULTS: A total of 61 patients with IBD (25 CD, 36 UC) were included. During preconception, patients with UC had higher SIBDQ bowel and social sub-scores than those with CD, but this reversed during postpartum. Patients with CD but not UC developed a significant, sustained improvement in SIBDQ upon becoming pregnant, which persisted into 12 months postpartum. In a multivariable linear regression model, clinical disease activity negatively predicted SIBDQ at every pregnancy timepoint and up to 12 months postpartum. SIBDQ was significantly lower in patients with CRP ≥ 8.0 mg/L during trimester 1 (T1), but not later in pregnancy. SIBDQ bowel sub-scores were significantly lower in patients with FCP ≥ 250 mg/kg at T2, T3, and 6 months postpartum. CONCLUSIONS: Clinical disease activity is a consistent negative predictor of HRQoL from conception to 12 months postpartum. Patients with UC experience better preconception HRQoL but suffer worse postpartum HRQoL than those with CD.

Multimodal intervention to improve the transition of patients with inflammatory bowel disease from pediatric to adult care: protocol for a randomized controlled trial.

BACKGROUND: Transition in care is defined as the "purposeful and planned movement of adolescents and young adults with a chronic medical condition from pediatric to adult-oriented healthcare systems/care providers." Currently, there are no Level 1 evidence-based interventions to improve the care of transitioning adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). The development of a transition program using a biopsychosocial approach will improve the standards for healthcare delivery to transitioning IBD patients. This is a protocol for a structured randomized controlled trial (RCT) to assess the clinical and implementation effectiveness of a multimodal intervention focused on improving patient function, transition readiness and outcomes among AYA patients with IBD being cared for at pediatric centers in Canada. METHODS: This multi-center RCT is a type 1 hybrid effectiveness-implementation trial to evaluate effectiveness of the intervention and how it can be implemented more widely after the trial. We will include patients aged 16.0-17.5 years. The intervention program consists of 4 core components: (1) individualized assessment, (2) transition navigator, (3) virtual patient skills-building with a focus on building resilience, self-management and self-efficacy, and (4) a virtual structured education program. The control group will undergo standard-of-care defined by each participating center. The primary outcome will be the IBD Disability Index, a validated measure to assess patient functioning. Secondary outcomes include transition readiness and success, anxiety and depression scales, and health service utilization rates. Additionally, we will measure implementation outcomes and related barriers and facilitators for the intervention program. DISCUSSION: The type 1 hybrid effectiveness-implementation design will allow for the development of a feasible, sustainable, and acceptable final intervention model. The intervention will consist of modules that can be accessed in an online, virtual platform. The implementation will allow centralization of interventions and funding in order to minimize the impact on local clinical practice or hospital resources. The authors anticipate that the main study limitation will relate to study subjects not completely adhering to every component of the intervention, which will be evaluated and addressed using the implementation science approach. TRIAL REGISTRATION: NCT05221281. Registry: ClinicalTrials.gov. Date of registration: February 2, 2022. https://clinicaltrials.gov/ct2/show/NCT05221281 .

Outcomes in Patients with Inflammatory Bowel Disease Transitioning from Pediatric to Adult Care: A Scoping Review.

PURPOSE: Approximately 25% of inflammatory bowel disease (IBD) patients are diagnosed in childhood and the incidence is increasing. Thus, more patients will transition to adult care in the future. Within the literature, transition readiness has been deemed important to achieving a successful transition; however, it is unclear what outcomes define success. This scoping review aims to summarize the literature on outcomes surrounding transition from pediatric to adult care in patients with IBD. METHODS: A scoping review was conducted with the following steps: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, (5) collating, summarizing, and reporting results, and (6) consultation with an additional researcher. Studies were identified from 5 databases and were included in part if (1) IBD was a disease of interest, (2) referred to transition as the movement and adjustment from pediatric to adult care, and (3) evaluated patient outcomes up to 5 years after first adult appointment and/or defined a successful or unsuccessful transition. RESULTS: Twenty-six peer-reviewed studies were included. Four studies defined transition success, while 2 studies defined an unsuccessful transition. Transition outcomes were categorized into these 6 themes: being comfortable in adult care (n = 4); health care utilization (n = 19); disease management (n = 15); knowledge (n = 5); quality of life (n = 6); self-efficacy (n = 7). CONCLUSIONS: Most studies evaluated transition outcomes by themes of health care utilization (n = 19) and disease management (n = 15). Future research should focus on engaging patients along with providers in order to create a consensus on indicators of transition success.

A Dedicated Pregnancy Clinic Improves Reproductive Knowledge in Inflammatory Bowel Disease.

BACKGROUND AND AIMS: Factors affecting pregnancy-related knowledge in women with inflammatory bowel disease (IBD) remain unknown. We aimed to determine these factors and to assess the impact of a dedicated pregnancy clinic on improving knowledge in women with IBD. METHODS: Adult women with IBD attending the pregnancy IBD clinic at the University of Alberta from 2014 to 2018 were enrolled. Each patient completed the Crohn's and Colitis Pregnancy Knowledge (CCPKnow) questionnaire at baseline and after individualized education delivered at each clinic visit. Knowledge levels were defined as very good if CCPKnow scores ≥ 14. Mean CCPKnow scores were reported with standard deviations (SD) and compared using the paired T test. RESULTS: The mean CCPKnow score in 117 patients at baseline was 9.65 (SD 4.18). Compared to those with disease duration < 5 years, those with disease duration > 5 years had higher rates of very good baseline knowledge (3.0% vs. 26.4%, p = 0.036). Similarly, those on preconception IBD-related therapy were more likely to have very good knowledge compared to those on no therapy (22.5% vs. 0%, p = 0.024). Fifty-one patients completed a post-clinic CCPKnow survey with a mean CCPKnow of 10.72 (SD 4.32). Participation in a pregnancy clinic improved reproductive knowledge in those with ulcerative colitis (p = 0.001), disease duration > 5 years (p = 0.017), those with at least a university education (p = 0.014) and those on IBD-related therapies (p = 0.026). CONCLUSIONS: Increased disease duration and preconception IBD-related therapy may be associated with increased pregnancy-related knowledge. A dedicated pregnancy clinic can improve reproductive knowledge in women with IBD.

Elevated IL-6 and IL-22 in Early Pregnancy Are Associated with Worse Disease Course in Women with Inflammatory Bowel Disease.

Inflammatory bowel diseases (IBD), including Ulcerative Colitis (UC) and Crohn's disease (CD), are inflammatory conditions of the intestinal tract that affect women in their reproductive years. Pregnancy affects Th1- and Th2-cytokines, but how these changes occur during pregnancy in IBD is unclear. We performed a longitudinal profiling of serum cytokines in a cohort of 11 healthy pregnant women and 76 pregnant women with IBD from the first trimester of pregnancy to the first 12 months post-partum. Participants were monitored for biochemical disease activity (C-reactive protein [CRP] and fecal calprotectin [FCP]) and clinical activities. Maternal cytokines were measured using ELISA. We identified changes in Th1 and Th17 cytokines throughout pregnancy in healthy pregnant women. During pregnancy, maternal serum cytokine expressions were influenced by IBD, disease activity, and medications. Active UC was associated with an elevation in IL-21, whereas active CD was associated with elevated IFN-γ, IL-6, and IL-21. Interestingly, T1 serum cytokine levels of IL-22 (>0.624 pg/mL) and IL-6 (>0.648 pg/mL) were associated with worse IBD disease activity throughout pregnancy in women with UC and CD, respectively. This shows serum cytokines in pregnancy differ by IBD, disease activity, and medications. We show for the first time that T1 IL-22 and IL-6 correlate with IBD disease course throughout pregnancy.

Concomitant 5-Aminosalicylate Therapy in Moderate-to-Severe Ulcerative Colitis Patients Escalated to Infliximab Is Not Beneficial.

BACKGROUND AND AIMS: While there is recent literature to support the discontinuation of 5-aminosalicylate (5-ASA) upon the initiation of biologics, continuing 5-ASA after treatment failure is relatively common. We aimed to assess the impact of concomitant 5-ASA therapy on clinical outcomes in ulcerative colitis (UC) patients escalated to infliximab. METHODS: This is a retrospective chart review of patients with moderate-to-severe UC started on infliximab between January 2012 and December 2017 at the University of Alberta. The primary outcome was clinical remission (partial Mayo score < 2) at 6 and 12 months. Secondary outcomes included endoscopic (endoscopic Mayo < 2) and deep remission (combined clinical and endoscopic remission) as well as the need for rescue therapy, hospitalization or colectomy. Univariate and multivariate logistic regression models were used to estimate the odds ratios and 95% CI for the outcomes. RESULTS: One hundred and twenty-one patients were followed over a period of 47 (SD = 34) months. Patients on 5-ASA had increased concomitant immunomodulator use (73.3% vs. 54.1%, p = 0.03). There was no difference in clinical remission at 6 (aOR 2.59, p = 0.07) or 12 months (aOR 0.43, p = 0.06). At 12 months, patients on concomitant 5-ASA were less likely to achieve endoscopic (aOR 0.08, p = 0.01) and deep remission (aOR 0.07, p = 0.02). Adverse outcomes such as need for rescue therapy, hospitalization, and colectomy did not differ between the groups. CONCLUSIONS: Our data suggest that 5-ASA may be stopped in patients with moderate-to-severe UC who have been escalated to infliximab therapy as it has no additional benefit to control inflammation.

Training disrupted: Practical tips for supporting competency-based medical education during the COVID-19 pandemic.

The COVID-19 pandemic has disrupted healthcare systems around the world, impacting how we deliver medical education. The normal day-to-day routines have been altered for a number of reasons, including changes to scheduled training rotations, physical distancing requirements, trainee redeployment, and heightened level of concern. Medical educators will likely need to adapt their programs to maximize learning, maintain effective care delivery, and ensure competent graduates. Along with a continued focus on learner/faculty wellness, medical educators will have to optimize existing training experiences, adapt those that are no longer viable, employ new technologies, and be flexible when assessing competencies. These practical tips offer guidance on how to adapt medical education programs within the constraints of the pandemic landscape, stressing the need for communication, innovation, collaboration, flexibility, and planning within the era of competency-based medical education.

Within-Stool and Within-Day Sample Variability of Fecal Calprotectin in Patients With Inflammatory Bowel Disease: A Prospective Observational Study.

BACKGROUND AND GOALS: The use of fecal calprotectin (FC) as a stool biomarker for differentiating inflammatory bowel disease (IBD) from IBS has been well validated, and there is a strong correlation between FC and the presence of endoscopic inflammatory lesions. However, recent studies have demonstrated intraindividual sample variability in patients with IBD, possibly limiting the reliability of using a single sample for monitoring disease activity. Our aim was to assess the within-stool and within-day sample variability of FC concentrations in patients with IBD. STUDY: We examined a cross-sectional cohort of 50 adult IBD patients. Eligible patients were instructed to collect 3 samples from different parts of the stool from their first bowel movement of the day and 3 samples from each of up to 2 additional bowel movements within 24 hours. FC concentrations were measured by a rapid, quantitative point-of-care test using lateral flow technology (Quantum Blue). Descriptive statistics were used to assess FC variability within a single bowel movement and between different movements at different FC positivity cutoffs. RESULTS: Within a single bowel movement, there was clinically significant sample variability ranging from 8% to 23% depending on the time of the day or on the FC positivity cutoff value. Between bowel movements, there was clinically significant sample variability ranging from 13% to 26% depending on the FC positivity cutoff. CONCLUSIONS: Considering a single FC sample, the first sample of the day with an FC positivity cutoff of 250 µg/g provided the most reliable indication of disease activity.

Assessing the Transition Intervention Needs of Young Adults With Inflammatory Bowel Diseases.

OBJECTIVES: The transition of inflammatory bowel disease (IBD) patients from pediatric to adult care can be challenging. Developing an effective transition intervention requires assessing the current transition experience for potential improvements, determining preferred content and format, and assessing patients' transition skills. METHODS: This mixed-methods study of 20 transitioned IBD patients (ages 17-20 years) used semistructured interviews and validated assessments of self-management/self-advocacy and IBD knowledge. Interviews were analyzed thematically. Assessment scores were compared with published reference data by estimating proportion or mean differences and 95% confidence intervals (CIs). RESULTS: The concept of a transition intervention was well-received by participants. Preferred content centered on medications, disease and what to expect. Preferred ways to acquire knowledge were one-on-one instruction, handouts, and websites. Identified themes were "individualized and multifaceted," "teach about transition," and "support the shift in responsibility." Among participants, 95% did not achieve 90% mastery of transition skills (0.6% higher [95% CI -10.7% to 9.5%] than the reference estimate) and the mean knowledge score was 15.15 (3.86 [95% CI 2.27 to 5.45] points higher than the reference estimate). CONCLUSIONS: We have identified preferred intervention formats and content as well as skill areas to target for improvement. As a result of this work, we will design a website intervention pertaining to identified themes.

Outpatient Ulcerative Colitis Primary Anti-TNF Responders Receiving Adalimumab or Infliximab Maintenance Therapy Have Similar Rates of Secondary Loss of Response.

GOALS: To compare the proportion of secondary loss of response to adalimumab and infliximab during maintenance treatment of ulcerative colitis (UC) after primary response to induction therapy. BACKGROUND: The efficacy of anti-tumor necrosis factor-α (TNF-α) therapy used to maintain response in patients with UC after primary response to induction therapy wanes with time, resulting in secondary loss of response. METHODS: A retrospective cohort study evaluating anti-TNF-naive UC outpatients who were primary responders to adalimumab and infliximab induction therapy and who advanced onto a maintenance regimen with the respective anti-TNF agent from 2003 to 2013 was conducted. The primary outcome was the proportion of patients in each treatment group that had secondary loss of response. The secondary outcome was time to secondary loss of response, analyzed by the Kaplan-Meier method analysis. RESULTS: A total of 102 UC primary anti-TNF responders met inclusion criteria. Thirty-six patients (35.3%) were treated with adalimumab and 66 patients (64.7%) with infliximab. Mean follow-up was 139.0 weeks for adalimumab and 158.8 weeks for infliximab. A total of 21/36 (58.3%) adalimumab-treated patients and 39/66 (59.1%) infliximab-treated patients experienced a secondary loss of response during maintenance therapy. Mean time to secondary loss of response was similar for adalimumab (55.8 wk) and infliximab (59.4 wk) (P=0.82). Sex, extent of colitis, previous or concomitant azathioprine, and concurrent corticosteroids with anti-TNF induction were not associated with increased risk of secondary loss of response. CONCLUSIONS: In this real-life cohort of anti-TNF-naive primary responders with UC, the proportion of secondary loss of response and the time to secondary loss of response are similar for adalimumab and infliximab.

Real-life treatment paradigms show infliximab is cost-effective for management of ulcerative colitis.

BACKGROUND & AIMS: Infliximab is effective for induction and maintenance of response in patients with moderate to moderately severe ulcerative colitis. Previous cost analyses of infliximab treatment for ulcerative colitis used models of colectomy vs infliximab and response rates derived from early clinical trials. In real life, therapeutic options are more complex; patients frequently choose to remain in an unwell state rather than undergo colectomy, and rates of response to infliximab are generally higher than those reported from clinical trials. We evaluate the real-life cost-effectiveness of infliximab for treatment of ulcerative colitis where infliximab was readily available compared with not available, causing patients to remain in unwell states. METHODS: We constructed a Markov model to simulate disease progression of patients with moderate or moderately severe ulcerative colitis who depended on corticosteroids and/or did not respond to thiopurine therapy. Utility scores and transition probabilities between health states were determined by using data from randomized controlled trials and real-life rates published by expert inflammatory bowel disease centers. Health care costs were obtained from the Ontario Case Costing Initiative and the Alberta Health Schedule of Medical Benefits documents. RESULTS: The incremental cost-effectiveness ratios for infliximab treatment of ulcerative colitis were $79,000 and $64,000 per quality-adjusted life year, compared with ongoing medical therapy, at 5-year and 10-year treatment time horizons, respectively. CONCLUSIONS: By using real-life response rates and patients' preference to avoid colectomy, infliximab therapy is a cost-effective strategy at a willingness-to-pay threshold of $80,000 for treatment of ulcerative colitis.

Letting go of control: A qualitative descriptive study exploring parents' perspectives on their child's transition from pediatric to adult care for inflammatory bowel disease.

Parents of young adults with chronic disease are important stakeholders in their child's transition from pediatric to adult care. There remains a gap in characterizing the parent experience during transition. This study describes the experiences of 13 mothers of young adults with inflammatory bowel disease during their child's transition. Most parents expressed fear and sadness about their child transitioning. Themes relating to involvement in their child's adult care included: direct involvement (sub-themes: disease management; logistics of care); and indirect involvement. Reasons for involvement included themes of parent's feelings and child's circumstances. Themes of involvement were discussed in terms of previous research on parenting of children with chronic disease. We suggest that future efforts focus on improving empathy and understanding toward parents of transitioning children and providing resources on how they can best support their child during transition and transfer to adult care.

Perspectives of patients, parents, and health care providers on facilitators of and barriers to the transition from pediatric to adult care in inflammatory bowel disease: a qualitative descriptive study.

Background: The typical transition from pediatric to adult care in patients with inflammatory bowel disease occurs with an increase in health care utilization and a decrease in adherence to medications and scheduled appointments. An effective transition could reduce negative impacts but requires identifying opportunities to improve this process. This study aims to describe barriers and facilitators of transition according to patients, parents, and health care providers. Methods: This study used a qualitative description approach. The lead author conducted semi-structured interviews with 17 patients, 13 parents, and 15 providers recruited from Western Canada. Latent content analysis identified themes in interview transcripts. Results: The theme of preparedness emerged across all groups as a transition facilitator. Other facilitators that emerged included patient characteristics, supportive parents, home environment, and supportive adult care team. Themes of barriers that emerged included patient factors, "hovering parents" and family factors, navigating a new health care system, and travel distance. Conclusions: This study describes facilitators and barriers according to each stakeholder involved in the transition process. Future studies should focus on designing and evaluating interventions aimed at promoting facilitators and addressing identified barriers in patients preparing to transition from pediatric to adult care.

Adalimumab for orbital myositis in a patient with Crohn's disease who discontinued infliximab: a case report and review of the literature.

BACKGROUND: Orbital myositis is a rare extra-intestinal manifestation of inflammatory bowel disease. Seventeen cases of Crohn's disease associated orbital myositis and 3 cases of ulcerative colitis associated orbital myositis have been reported in the published literature since 1970. We report the use of adalimumab (Abbott, Canada, Inc.) for orbital myositis in a patient with Crohn's disease who discontinued infliximab (Janssen, Canada, Inc.) and review of the published literature. CASE PRESENTATION: A 35 year-old male with a 7-year history of Crohn's disease was treated with an ileocolonic resection and re-anastomosis followed by infliximab which maintained full endoscopic and clinical remission for four years. After stopping the infliximab for infusion-related reactions he presented with 3-day history of severe right eye pain, pain with ocular movement, proptosis, and conjunctival injection. He had no intestinal symptoms and endoscopic assessment revealed no active luminal disease. CT of the orbit revealed an enlarged right medial rectus muscle with tendonous involvement and a diagnosis of orbital myositis was made. Treatment with 80 mg per day prednisone with tapering dose and adalimumab, induction and maintenance, resulted in rapid resolution of the orbital myositis and ocular symptoms with no recurrences on follow-up at 10 months. CONCLUSIONS: The current case demonstrates a rare extraintestinal manifestation of Crohn's disease, orbital myositis, and its temporal relationship to the discontinuance of infliximab therapy and its successful treatment, without recurrence with tapering prednisone and adalimumab.

The Impact of the COVID-19 Pandemic on IBD Care in Alberta: Patient and Provider Perspectives.

Objective: The COVID-19 pandemic necessitated changes in the delivery of ambulatory care for patients with inflammatory bowel disease (IBD), including transitioning many visits to virtual formats and delaying non-urgent assessments. We aimed to evaluate the impact of the COVID-19 pandemic on IBD patient care from health care providers' (HCP) and patients' perspectives. Methods: We administered a 42-question HCP survey and a 44-question patient survey, which evaluated HCP and patient experience and satisfaction with care delivery and delays in access to IBD care during the first wave of the COVID-19 pandemic. Results: Surveys were completed by 19.2% (24/125) HCPs and 25.8% (408/1581) patients. Overall, 82.7% of patients with IBD maintained their care without disruption. The majority of patients were satisfied with a transition to virtual care. All HCPs were willing to use virtual care in the future; however, 60% (14/24) of HCPs reported that virtual care was not equivalent to in-person visits. Patients reported concerns around access to health resources, the uncertainty of IBD-specific care, and fear and stress due to employment uncertainty and safety. Providers also reported concerns about patient safety, patient education, adequate remuneration and challenges with providing care for new patients on virtual platforms. Conclusion: While some delays in health care delivery occurred during the first wave of the pandemic, both patients and HCPs were satisfied with a transition to new models of care delivery. These models may remain in place post-pandemic and allow for flexibility in care delivery that is acceptable to both patients and HCPs.

Incidence and Prevalence of Primary Sclerosing Cholangitis: A Meta-analysis of Population-based Studies.

BACKGROUND: Primary sclerosing cholangitis is a chronic liver disease associated with significant morbidity, mortality, and healthcare utilization. We conducted a systematic review and meta-analysis of population-based studies of the incidence and prevalence of primary sclerosing cholangitis. METHODS: Medline and Embase were systematically searched to identify population-based studies of a defined geographic area and reported the incidence or prevalence of primary sclerosing cholangitis in the general population. Meta-analyses, using random-effects, were performed to calculate overall and country-specific incidence (per 100 000 persons/year) and prevalence rates (per 100 000 persons) with 95% confidence intervals. RESULTS: The 14 studies on incidence and the 12 for prevalence originated from North America, Asia, Europe, and Oceania. Incidence and prevalence rates of primary sclerosing cholangitis were 0.87 (95% confidence interval, 0.59-1.29) and 13.53 (95% confidence interval, 10.20-17.94) per 100 000 persons, respectively. CONCLUSIONS: Both the prevalence and incidence of primary sclerosing cholangitis is low in the general population. Future studies on the incidence and prevalence of primary sclerosing cholangitis in the general population should be directed at Asia, Africa, and Latin America to allow for a more robust assessment of the global epidemiology of primary sclerosing cholangitis.

Primary sclerosing cholangitis is a chronic liver disease with complications such as cirrhosis, cancer, and death. This study summarizes the incidence (0.87 per 100 000) and prevalence (13.53 per 100 000) of PSC and highlight needs in research to study the epidemiology of PSC.