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Background and Aims Corticosteroid-free remission is a primary treatment goal in IBD which may be achieved with greater use of anti-TNF therapy. We defined temporal trends of corticosteroid use, anti-TNF use, hospitalization and surgery in a prevalent IBD cohort within the province of Alberta, Canada. Methods Health administrative data were used to identify medication dispensing, hospitalizations and surgery in individuals with IBD from 2010 to 2015. Temporal trends were calculated using log-binomial regression for medications and log-linear models for hospitalizations and surgery rates. Analyses were stratified based on geographic location. Results Of 28890 individuals with IBD, 50.3% had Crohn’s disease. One in six individuals (15.45%) were dispensed a corticosteroid. Corticosteroid use decreased in both metropolitan areas (AAPC −20.08%, 95% CI: −21.78 to −18.04) and non-metropolitan areas (AAPC −18.14%, 95% CI: −20.78 to −18.04) with a similar pattern for corticosteroid dependence. Corticosteroid dependence was more prevalent in UC vs. CD (P < 0.05), and in the pediatric IBD cohort (13.45) compared to the adult (8.89) and elderly (7.54) cohorts (per 100 prevalent population, P < 0.001). The proportion of individuals dispensed an anti-TNF increased over the study period (AAPC 12.58%, 95% CI: 11.56 to 13.61). Significantly more non-metropolitan versus metropolitan residing individuals were hospitalized for any reason, for an IBD-related, or IBD-specific indication (all P < 0.001) though the proportion requiring IBD surgery was similar between groups. Conclusions An increase in anti-TNF use corresponded to a decline in corticosteroid use and dependence in those with IBD. Inequities in IBD care still exist based on location and age.

Objectives MR enterography (MRE) Index of Activity (MaRIA) and Clermont are validated scores that correlate with Crohn’s disease (CD) activity; however, the Clermont score has not been validated to correlate with the degree of change in mucosal inflammation post induction treatment in children. This pilot study evaluated if MaRIA and Clermont scores can serve as surrogates to ileocolonoscopy for assessing interval change in mucosal inflammation in pediatric CD post-induction treatment. Methods Children with known or newly diagnosed ileocolonic CD starting or changing therapy underwent ileocolonoscopy, scored with simple endoscopic score for Crohn’s disease (SES-CD), and MRE on the same day at two time points (Week 0 and 12). Accuracy of global MaRIA and Clermont indices relative to ileocolonoscopy in detecting degree of post-treatment interval change in mucosal inflammation was assessed through correlational coefficients (r). Inter-reader agreement was calculated for imaging scores through intraclass correlation (ICC). Results Sixteen children (mean age 11.5 ± 2.8) were evaluated. Global MaRIA/Clermont correlated with SES-CD in detecting the degree of change in mucosal inflammation (r = 0.676 and r = 0.677, P < 0.005, respectively). Correlation for pooled timepoint assessments between SES-CD and global MaRIA/Clermont was moderate (r = 0.546, P < 0.001 and r = 0.582, P < 0.001, respectively). Inter-rater reliability for global MaRIA and Clermont was good (ICC = 0.809 and ICC = 0.768, respectively, P < 0.001). Conclusions MRE-based global scores correlate with endoscopic indices and may be used to monitor disease changes in children with CD undergoing induction treatment, which can advise the physician if treatment changes should be made.

The prevalence of inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis, in Canada, is over 0.75% in 2021. Many individuals with IBD are immunocompromised. Consequently, the World Health Organization’s declaration of a global pandemic uniquely impacted those with IBD. Crohn’s and Colitis Canada (CCC) formed the COVID-19 and IBD Taskforce to provide evidence-based guidance during the pandemic to individuals with IBD and their families. The Taskforce met regularly through the course of the pandemic, synthesizing available information on the impact of COVID-19 on IBD. At first, the information was extrapolated from expert consensus guidelines, but eventually, recommendations were adapted for an international registry of worldwide cases of COVID-19 in people with IBD. The task force launched a knowledge translation initiative consisting of a webinar series and online resources to communicate information directly to the IBD community. Taskforce recommendations were posted to CCC’s website and included guidance such as risk stratification, management of immunosuppressant medications, physical distancing, and mental health. A weekly webinar series communicated critical information directly to the IBD community. During the pandemic, traffic to CCC’s website increased with 484,755 unique views of the COVID-19 webpages and 126,187 views of the 23 webinars, including their video clips. CCC’s COVID-19 and IBD Taskforce provided critical guidance to the IBD community as the pandemic emerged, the nation underwent a lockdown, the economy reopened, and the second wave ensued. By integrating public health guidance through the unique prism of a vulnerable population, CCC’s knowledge translation platform informed and protected the IBD community.

Inflammatory bowel disease (IBD) is a disease that results from dysregulation of the immune system and frequently requires medications that can affect the immune response to infections; therefore, it was imperative to quickly understand the risk of coronavirus disease 2019 (COVID-19) infection on persons living with IBD and how that risk may be increased by commonly used IBD medications. The IBD research community in Canada and beyond quickly established collaborative efforts to better understand the specific risk posed by COVID-19 on persons with IBD. We learned that IBD itself was not a risk factor for death or serious complications of COVID-19, and that most commonly used drug classes (with the notable exception of corticosteroids) do not increase the risk of COVID-19-related adverse outcomes. The risk factors for serious complications and death from COVID-19 appear to be similar to those identified in the wider population; those being advanced age, having pre-existing heart or lung disease, and smoking. We recommend that persons with IBD do not alter their course of therapy to avoid complications of COVID-19, though the indiscriminate use of corticosteroids should be avoided. Persons with IBD should follow the same public health recommendations as the general population to reduce their personal risk of acquiring COVID-19.

There has been a dramatic rise in mental health difficulties during the coronavirus disease 2019 (COVID-19) pandemic. While young adults have the lowest risk of hospitalization and mortality due to COVID-19, they have been identified as being at highest risk of detrimental mental health outcomes during the pandemic, along with women, those with lower socioeconomic status and those with pre-existing mental health conditions. Somewhat of a crisis in mental health has emerged across the general population through the evolution of the pandemic. A national Canadian survey identified a quadrupling of those experiencing pervasive elevated anxiety symptoms early in the pandemic compared to pre-pandemic levels, and a doubling of those with pervasive elevated depressive symptoms. Independent of the pandemic, persons with inflammatory bowel disease (IBD) can face multiple challenges related to their disease, which can result in a significant psychosocial burden and psychologic distress. Anxiety and depression have been found to be more prevalent in persons with IBD. Many potential factors contribute to the increased psychologic distress and negative impacts on mental health of the COVID-19 pandemic on persons with IBD. These include the fears of contracting COVID-19 or infecting other people. Many believe that IBD or its treatments predispose them to an increased risk of COVID-19 or a worse outcome if acquired. Concerns about access to health care add to mental distress. People with IBD generally report lower quality of life (QOL) compared to community controls. Psychologic interventions, in addition to adequate disease control, have been shown to improve health-related QOL. Uncertainty is another factor associated with reduced health-related QOL. Most studies suggest that persons with IBD have suffered QOL impairment during the pandemic in comparison to the pre-pandemic period. Uncertainties brought on by the pandemic are important contributors for some of the reduction in QOL.

The risk of hospitalization and death from Coronavirus disease-19 (COVID-19) increases with age. The extreme elderly have been particularly vulnerable, with those above the age of 80 having a case-fatality rate as high as 15%. Aging of the immune system can lead to impaired inflammatory responses where eradication of an organism such as Severe Acute Respiratory Syndrome CoronaVirus 2 (SARS-CoV2) is inadequate but is exaggerated in such a way as to enhance pneumonia and acute respiratory distress syndrome. Frailty and comorbidity are both more common in the elderly, and these can enhance the morbidity and mortality from COVID-19. Studies from Northern California and Italy suggest that elderly persons with inflammatory bowel disease (IBD) were more likely to acquire SARS-CoV-2 infection than youths with IBD. While the specific impact of age-related comorbidity is less well established among people with IBD who acquire COVID-19, data from the Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-IBD) database reported that having two or more chronic illnesses was independently associated with developing severe COVID-19 among people with IBD. Despite having exaggerated auto-inflammatory responses, people with IBD do not appear to have an overall increased risk of developing severe COVID-19 than the general population. However, whether seniors with IBD do worse once they acquire COVID-19 compared with seniors without IBD is not known. The advent of telehealth care has posed an information technology challenge for many seniors with and without IBD. Most persons with IBD have expressed satisfaction with virtual IBD health care (phone or video-based visits). While the elderly may have less robust immune responses to vaccinations, learning from experiences with other vaccination programs, especially influenza, have shown that vaccinating seniors decreases both morbidity and mortality and, in turn, healthcare resources.

At the beginning of the coronavirus disease 2019 (COVID-19) pandemic, there were many unknowns: transmission vectors of the virus, appropriate intervention strategies and if being immunocompromised due to inflammatory bowel disease (IBD), for example, or medications put a person at increased risk for severe COVID-19. Imposing and relaxing of public health restrictions at different times and in different regions in Canada led to different epidemiologies of the virus in different provinces and territories. In order to understand the waxing and waning of waves of the COVID-19 pandemic, it is necessary to understand the effective reproductive number (Rt) and the countervailing forces that exert upward or downward pressure on the spread of the virus at a given point in time. As many regions in Canada deal with a third wave, the primary forces affecting the Rt of severe acute respiratory syndrome coronavirus 2 are variants of concern and the increasing vaccinations of Canadians leading to increased population-level immunity. Fortunately, for the IBD population, current research suggests that those with IBD are not at increased risk of contracting COVID-19, nor of having a more severe disease course when compared to the general population.

Coronavirus disease 2019 (COVID-19) in children with inflammatory bowel disease (IBD) typically results in a mild infection, similar to those without IBD. Children and adolescents have less severe manifestations of COVID-19 compared to older people, whether or not they have IBD. However, some IBD medications (in particular, corticosteroids) are associated with more severe COVID-19. During the first year of the global pandemic, more IBD care was provided with online technology, necessitated by efforts to reduce hospital and clinic visits. Additionally, non-endoscopic monitoring of inflammation has been required due to the cancellation of non-urgent procedures, resulting in longer endoscopy wait-times. In contrast, pregnant people (with and without IBD) who contract COVID-19 are at increased risk of severe manifestations, death and preterm delivery, making them a priority for severe acute respiratory syndrome coronavirus 2 protective measures and vaccination. Few studies have examined effect of COVID-19 on IBD-related disease activity in pregnant people with IBD. The pandemic has significantly affected the mental health and sense of well-being of children and their families, as well as pregnant people with IBD. These groups were much more likely to experience anxiety and depression compared with prior to the pandemic, even while concern has mostly abated regarding the effect of IBD medications and COVID-19 severity. Unfortunately, the availability of mental health care providers who specialize in people with IBD has not kept pace with the increasing demand.

The COVID-19 pandemic has ushered a globally focused vaccine development program that produced multiple successful vaccines within a year. Four SARS-CoV-2 vaccines have been approved for use in Canada, using two different technologies, all of which have shown excellent efficacy in reducing the rate of symptomatic COVID-19 infection and 100% efficacy in preventing death from COVID-19. People with inflammatory bowel disease (IBD), like many others with immune-mediated chronic diseases, were excluded from the pivotal trials of these vaccines, leading to early hesitancy by regulatory bodies to endorse administering the vaccines to these groups. However, recent data has shown that the adverse event rate to SARS-CoV-2 vaccine among people with IBD is similar to the general population. Early data has further shown that people with IBD are capable of mounting a robust immune response to SARS-CoV-2 vaccines, particularly following a second dose, whereas the response to the first dose is blunted in those receiving anti-TNF therapy or conventional immunosuppressants (azathioprine, 6-mercaptopurine, methotrexate). Based on these data and evidence from previous vaccine programs among people with IBD, multiple national and international expert panels have recommended that individuals with IBD receive complete vaccination against SARS-CoV-2 as soon as possible.

Objectives With the increased prevalence of childhood-onset inflammatory bowel disease (IBD), there is a greater need for a planned transition process for adolescents and young adults (AYA). The Canadian IBD Transition Network and Crohn’s and Colitis Canada joined in collaborative efforts to describe a set of care consensus statements to provide a framework for transitioning AYA from pediatric to adult care. Methods Consensus statements were drafted after focus group meetings and literature reviews. An expert panel consisting of 20 IBD physicians, nurses, surgeon, adolescent medicine physician, as well as patient and caregiver representatives met, discussed and systematically voted. The consensus was reached when greater than 75% of members voted in agreement. When greater than 75% of members rated strong support, the statement was rendered a strong recommendation, suggesting that a clinician should implement the statement for all or most of their clinical practice. Results The Canadian expert panel generated 15 consensus statements (9 strong and 6 weak recommendations). Areas of focus of the statements included: transition program implementation, key stakeholders, areas of potential need and gaps in the research. Conclusions These consensus statements provide a framework for the transition process. The quality of evidence for these statements was generally low, highlighting the need for further controlled studies to investigate and better define effective strategies for transition in pediatric to adult IBD care.

Background The transfer of information is a key aspect of the transition of adolescent patients with inflammatory bowel disease (IBD) from pediatric to adult care. This is typically accomplished through the use of a consultation letter with a medical summary of the patient being transferred. To improve the quality and completeness of information included in a transfer letter, we developed a standardized medical summary template by integrating the feedback of adult and pediatric health care providers. Methods To develop the letter template, we purposively sampled gastroenterologists or nurse practitioners caring for patients with IBD in four Canadian cities and invited them to take part in focus group discussions. Using a semi-structured approach, we explored the items deemed essential for inclusion in a transfer summary. Using the conventional content analysis framework, the focus group discussions were inductively coded to identify areas of priority for inclusion in the template. Results Four focus groups were conducted, comprising 17 health care providers of 30 invited (56.7% participation). The resulting medical summary template included the following major headings: patient/disease characteristics, therapeutics history (including medications and surgeries), clinical history and current status, noteworthy investigations, history of complications (including hospitalizations), family history, immunization history and psychosocial history. The template also addressed health system process factors (i.e., urgency of transfer, mode of delivery and confidentiality) to ensure a seamless transfer to adult care. Conclusions The standardized medical summary template should be used by pediatric providers to ensure that essential patient information and disease characteristics are sent to an adult provider.

Background and Aims Surgical treatment of inflammatory bowel disease (IBD) may impair female fertility. We conducted a systematic review to determine the risk of infertility and pregnancy outcomes in women with IBD who underwent surgery. Methods We identified studies evaluating the impact of IBD surgery on infertility and pregnancy outcomes. Risk ratios (RR) and 95% confidence intervals (CIs) were pooled when data were presented using contingency tables. Odds ratios (OR) were pooled when raw numbers were not provided. GRADE was used to evaluate the certainty of evidence. Results Sixteen observational studies were included, comparing women with and without surgery, open and laparoscopic surgery and before and after surgery. All studies were of low quality. The effect of surgery on infertility at 12 months (RR 5.45, 95% CI 0.41 to 72.57) was uncertain. Similarly, the fertility effects of laparoscopic versus open surgery method were unclear (RR 0.70, 95% CI 0.38 to 1.27). The impact of IBD surgery on pregnancy outcomes should be interpreted with caution. Surgery was associated with miscarriage (OR 2.03, 95% CI 1.14 to 3.60), use of assisted reproductive technologies (RR 25.09, 95% CI 1.56 to 403.76) and caesarean section (RR 2.23, 95% CI 1.00 to 4.95), but not with stillbirth (RR 1.96, 95% CI 0.42 to 9.18), preterm birth (RR 1.91, 95% CI 0.67 to 5.48), low birth weight (RR 0.61, 95% CI 0.08 to 4.83) or small for gestational age (RR 2.54, 95% CI 0.80 to 8.01). Conclusion The effect of surgical therapy for IBD on rates of female infertility and pregnancy-related outcomes was uncertain due to poor quality of existing literature.

The SARS-CoV-2 pandemic has had a profound impact on inflammatory bowel disease (IBD) health care delivery. The implementation of necessary public health restrictions has restricted access to medications, procedures and surgeries throughout the pandemic, catalyzing widespread change in how IBD care is delivered. Rapid large-scale implementation of virtual care modalities has been shown to be feasible and acceptable for the majority of individuals with IBD and health care providers. The SARS-CoV-2 pandemic has exacerbated pre-existing barriers to accessing high-quality, multidisciplinary IBD care that addresses health care needs holistically. Continued implementation and evaluation of both synchronous and asynchronous eHealthcare modalities are required now and in the future in order to determine how best to incorporate these modalities into patient-centred, collaborative care models. Resources must be dedicated to studies that evaluate the feasibility, acceptability and effectiveness of eHealth-enhanced models of IBD care to improve efficiency and cost-effectiveness, while increasing quality of life for persons living with IBD. Crohn’s and Colitis Canada will continue to play a major leadership role in advocating for the health care delivery models that improve the quality of life for persons living with IBD.

Persons with inflammatory bowel disease (IBD) make up more than 0.75% of the Canadian population in 2021. Early in the COVID-19 pandemic, individuals with IBD, particularly those on immunosuppressive therapies, were concerned that their health status may place them at higher risk of contracting COVID-19 or experiencing more severe disease course if infected with SARS-CoV-2. In response, Crohn’s and Colitis Canada developed the COVID-19 and IBD Taskforce in March 2020 to rapidly synthesize the evolving knowledge of COVID-19 as relevant to Canadians with IBD. The Taskforce communicated expert information directly to the Canadian IBD community through online tools and a webinar series. In order to understand the full impact of COVID-19 on the IBD community, Crohn’s and Colitis Canada commissioned a policy report that was informed through a systematic literature review and synthesized across working groups along the following domains: Epidemiology, Children and Expectant Mothers with IBD, Seniors with IBD, Mental Health, Risk Factors and Medications, Vaccines, and Healthcare Delivery during the Pandemic and the Future Model of IBD Care. This report from Canadian physicians, researchers, and IBD community representatives highlights the physical, mental, and health systems impact of COVID-19 on the entire spectrum of the IBD community, including children, adolescents, adults, seniors, and pregnant people with IBD. This executive summary provides an overview of the crucial information from each of the chapters of the policy report, supplemented with additional information made available through Crohn’s and Colitis Canada’s webinar-based knowledge translation platform.

Background Most administrative studies of hospitalization in inflammatory bowel disease (IBD) use two definitions: IBD in any diagnostic position (IBD-ANY), and IBD as the most responsible diagnostic (IBD-MRD). There is a third less commonly used definition: total hospitalization; this definition captures all hospitalizations of prevalent IBD patients and therefore it can give a more realistic picture of the burden of IBD. Aims To compare differing definitions (total, IBD-ANY, and IBD-MRD) of hospitalizations. Methods A previously defined population-based IBD prevalent cohort for Alberta (n=30,698) was used to pull all hospital admissions from the Discharge Administrative Database (DAD; 2002–2015). Three hospitalization definitions were used: i. Total (all hospitalizations of prevalent cohort independent of presence of code for IBD); ii. IBD-ANY (code for IBD [K50.x; K51.x] contained in any diagnosis field); and, iii. IBD-MRD (most responsible diagnosis was IBD). Age- and sex- standardized rates (2015 Canadian population) were calculated using the prevalent population. Log-linear regression was performed to calculate Average Annual Percentage Change (AAPC) with associated 95% confidence intervals (CI) of each type of hospitalization. We assessed the top five most common most-responsible diagnosis codes for hospitalizations that were contained in the total hospitalizations but not an IBD-ANY hospitalization. Results From 2002 to 2015, 63.5% of IBD prevalent patients in AB had ≥1 hospitalization; 44.2% had ≥1 IBD-ANY hospitalization; 28.6% had ≥1 IBD-MRD hospitalization; and, 40.6% had a hospitalization that did not contain a code for IBD. All hospitalization rates decreased significantly over time. Of the top five most common most responsible diagnosis, contained in admissions that were not IBD-ANY, three were gastroenterological: i. K52.9 (non-infective gastroenteritis); ii. A09.9 (diarrhea and gastroenteritis of presumed infectious origin); and, iii. Z43.2 (attention to ileostomy). Conclusions Total hospitalizations is an important measure to report since accounting for all hospitalizations of IBD patients is necessary in order to allocate healthcare resources appropriately. To be able to ensure these patients receive the care they need we need to be able to accurately assess the true burden of IBD. Funding Agencies CIHR

The development of anti-tumour necrosis factor (TNF) therapies has transformed the care of patients with immune-mediated diseases such as inflammatory bowel disease (IBD), including ulcerative colitis and Crohn’s disease, psoriasis and inflammatory arthropathies, including rheumatoid arthritis and ankylosing spondylitis. For IBD patients, these biologic therapies are effective at inducing and maintaining remission (1), reducing the need for surgery (2) and improving quality of life (3). Although anti-TNF therapies are effective in several different immune-mediated disorders, individual biologics are not, necessarily, equally effective in all disorders suggesting that their actions may differ between disorders. For example, the paradox that anti-TNF drugs used to treat rheumatoid arthritis (RA) and psoriasis may yet cause joint pains and skin reactions in IBD patients, emphasizes our imperfect understanding of the mechanism of action of these biologic therapies and the need to evaluate treatment outcomes separately for different disorders. The main factors that limit the use of anti-TNF drugs are adverse events and cost. Anti-TNF therapy is associated with joint pains, dermatological disorders and transfusion reactions (4). Transfusion reactions are associated with the development of antibodies to anti-TNF agents and this may also be associated with reduced treatment efficacy (5). Anti-TNF agents are also associated with an increased risk of infection (6) and risk of lymphoma although these risks may be exacerbated, to a greater or lesser extent, by the concomitant use of azathioprine or other immunosuppressive agents (7). Anti-TNF therapies are also expensive costing up to $20,000 per year for each patient in Canada. Canada spent more on biologic therapies for all indications than on any other class of drug in 2018 accounting for 8.2% of the $33.7 billion spent on prescription medications (8). While the cost of these therapies is significant, the cost of having IBD is also expensive to society. It is estimated that the indirect cost of IBD was $1.29 billion in Canada in 2018 (9,10). Anti-TNF therapies can improve quality of life and productivity and, accounting for these societal costs, biologics may offer value for money (11). In the Canadian setting, health care is mainly funded centrally by the tax payer and the government, understandably, focuses on how biologic therapy may reduce health care costs. This is less clear cut with research using health administrative data failing to demonstrate any significant decrease in hospitalizations or surgical resections in the anti-TNF era compared to what would be expected if these drugs had not been introduced (12). Given this perspective, it is understandable that approaches to reducing the cost of these drugs are being explored. The emergence of biosimilars, also known as subsequent entry biologics have provided an opportunity for third party payers to reduce anti-TNF therapy drug costs. A biosimilar is a biological medical product that is similar to the original but manufactured by a different company once the patent for that product has expired. They are typically less expensive than the original product and therefore an obvious target in attempts to reduce biologic drug costs. Biosimilars are distinct from usual generic drugs, which are simple small molecules that are relatively straightforward to reproduce and manufacture on a large scale, and identical to the original drug. Biologic therapies are more complex proteins and require replication in living cells. The product is dependent on the type of genetically modified cell being used, the production process and purification techniques (13). The manufacturing process is considerably more expensive than standard small molecules and therefore costs of biosimilars are higher than generically produced drugs. Furthermore, the variation from the originator is greater than would normally be seen with generics. However, it is important to emphasize that even with the original manufacturer there is potential for variability between each manufacturing run due to the complexity of living organisms. The Federal Drug Agency has released documents regarding the approval process for biosimilars (14) that other regulatory authorities have largely adopted (15). Essentially biosimilars must show a high degree of similarity to the original product and have no clinically meaningful differences in safety, purity and potency (14). This is a reasonable definition in principle but the definitions of ‘high degree of similarity’ as well as ‘clinically meaningful differences in safety and potency’ need further clarification in clinical practice. The Canadian Association of Gastroenterology has previously published a position statement on biosimilars (16) but this was 6 years ago, and more data are now available. Crohn’s and Colitis Canada has published a position statement more recently (17) but the two organizations felt it was of value to release a joint position statement after a full literature review. Several positions statements have been released by various organizations (Table 1) but none has provided an explicit literature search, nor have they assessed the quality of evidence of a defined clinical question according to GRADE criteria (18). Table 1. Position statements reached by other groups on the use of biosimilars

Background & AimsPatients with inflammatory bowel disease (IBD) may be at increased risk of some vaccine-preventable diseases. The effectiveness and safety of vaccinations may be altered by immunosuppressive therapies or IBD itself. These recommendations, developed by the Canadian Association of Gastroenterology and endorsed by the American Gastroenterological Association, aim to provide guidance on immunizations in patients with inflammatory bowel disease. This publication focused on live vaccines.MethodsSystematic reviews evaluating the efficacy, effectiveness, and safety of vaccines in patients with IBD, other immune-mediated inflammatory diseases, and the general population were performed. Critical outcomes included mortality, vaccine-preventable diseases, and serious adverse events. Immunogenicity was considered a surrogate outcome for vaccine efficacy. Certainty of evidence and strength of recommendations were rated according to the GRADE (Grading of Recommendation Assessment, Development, and Evaluation) approach. Key questions were developed through an iterative process and voted on by a multidisciplinary panel. Recommendations were formulated using the Evidence-to-Decision framework. Strong recommendation means that most patients should receive the recommended course of action, whereas a conditional recommendation means that different choices will be appropriate for different patients.ResultsThree good practice statements included reviewing a patient’s vaccination status at diagnosis and at regular intervals, giving appropriate vaccinations as soon as possible, and not delaying urgently needed immunosuppressive therapy to provide vaccinations. There are 4 recommendations on the use of live vaccines. Measles, mumps, rubella vaccine is recommended for both adult and pediatric patients with IBD not on immunosuppressive therapy, but not for those using immunosuppressive medications (conditional). Varicella vaccine is recommended for pediatric patients with IBD not on immunosuppressive therapy, but not for those using immunosuppressive medications (conditional). For adults, recommendations are conditionally in favor of varicella vaccine for those not on immunosuppressive therapy, and against for those on therapy. No recommendation was made regarding the use of live vaccines in infants born to mothers using biologics because the desirable and undesirable effects were closely balanced and the evidence was insufficient.ConclusionsMaintaining appropriate vaccination status in patients with IBD is critical to optimize patient outcomes. In general, live vaccines are recommended in patients not on immunosuppressive therapy, but not for those using immunosuppressive medications. Additional studies are needed to evaluate the safety and efficacy of live vaccines in patients on immunosuppressive therapy.

Background The only curative treatment for Hirschsprung disease (HD) is surgical repair. However, some patients experience poor postoperative outcomes. We determined long-term outcomes of all HD patients in Ontario, Canada’s most populous province. Methods We conducted a retrospective cohort study including all children with HD born between April 1, 1991 and March 31, 2014 in Ontario using linked health administrative data. Each HD case was matched to five non-HD controls on sex, date of birth, region of residence and income and followed to March 31, 2016. Chronic diarrhea and constipation were identified using combinations of outpatient physician billing codes in both HD patients and non-HD residents of the province. We determined risk factors associated with diarrhea and constipation, including surgery type and sociodemographic characteristics, using multivariable conditional logistic regression, and reported adjusted odds ratios (aORs). Results There were 3,265,172 children born in the study period, of whom 673 had HD. Compared to controls, chronic constipation was more common in HD patients (27.5% versus 2.1%; aOR 17.2, 95% CI 12.6 to 23.4), as was chronic diarrhea (29.9% versus 6.9%, aOR 5.22, 95% CI 4.19 to 6.50). In HD patients, older age at surgery was associated with increased risk of chronic constipation (OR 2.71, 95% CI 1.75 to 4.20). Surgery type, sex, rural/urban residence and income were not associated with risk of chronic constipation or diarrhea. Conclusion Chronic constipation and diarrhea were common following surgery for HD. Older age at surgery was associated with subsequent risk of chronic constipation. Surgery type was not associated with increased risk of chronic constipation or diarrhea.

The indirect cost of illness represents the portion of human capital that is foregone due to lost productivity of patients and their caregivers and out-of-pocket healthcare expenses borne directly by patients. Indirect costs among persons with inflammatory bowel diseases (IBD) may be substantial because disease onset occurs during the teens and 20s for most persons and is lifelong. Thus, most persons with IBD are affected during periods of study or employment. The literature on indirect health-related costs among persons with IBD is limited, particularly with regard to Canadian studies. The greatest burden of indirect costs in this population relates to absenteeism and presenteeism among working individuals and premature retirement. However, costs related to reduced professional development and personal achievement due to illness—as well as caregiver costs—are largely unknown. After being extrapolated from multiple sources, the total indirect health-related cost of IBD in Canada in 2018 is estimated to be $1.29 billion Canadian dollars. Notably, this may be a significant underestimate because costs relating to presenteeism, reduced achievement and caregiver burden could not be estimated and are excluded from this calculation. Highlights Indirect costs account for a major portion of total healthcare costs among persons with inflammatory bowel disease (IBD) and are higher than indirect costs among persons without IBD. Persons with IBD are more likely to require time off work (absenteeism) and have reduced productivity at work (presenteeism) due to illness as compared with persons without IBD. Premature retirement and long-term disability are major factors contributing to indirect costs among IBD patients. A substantial proportion of individuals with IBD pay out-of-pocket for complementary and alternative medicines. After being extrapolated from multiple sources, the total annual indirect cost of IBD in Canada is estimated to be $1.29 billion CAD in 2018, or $4781 CAD per person with IBD. Key Summary Points The total indirect economic burden of IBD in Canada is estimated to be $1.29 billion CAD in 2018, or roughly $4781 CAD per person with IBD. This estimate comprises lost wages related to sick days and disability, premature retirement and premature death, and out-of-pocket costs. Losses from presenteeism, reduced professional development and caregiver burden are not included due to insufficient data on the cost impact of these factors. In a meta-analysis of studies between 1994 and 2014, the annual indirect cost of absenteeism for IBD patients ranged from $515.67 USD (USA) to $14,727 USD (Germany) per patient per annum (pooled estimate $7189 USD), after adjusting for purchasing power disparity. A large US survey found that, on average, IBD patients incurred an extra 4.8 days off of work and $783 USD in excess lost wages annually compared with persons without IBD. A study based on US private insurance claims found that ulcerative colitis patients cost an additional $2164 per person per annum relating to disability days and medically related absenteeism. A prospective study from an IBD centre reported weekly indirect health-related costs of $1133 for IBD patients with active disease, $370.13 for IBD patients in remission, and $191.23 for persons without IBD relating to both presenteeism and absenteeism. In a survey of 744 IBD patients from Manitoba, reduced workplace productivity during the previous 14 days was reported in 37% of individuals, including a reduction of one to two days by 18% of patients, thre to nine days by 16% of patients, and on most days by 3% of patients. The estimated average lifetime lost wages due to premature retirement is $1,044,498 CAD per person with Crohn’s disease and $994,760 CAD per person with ulcerative colitis. Aggregated over all IBD retirees, this equates to roughly $629 million CAD in permanent lost wages annually due to premature retirement. The lifetime indirect cost associated with premature death among IBD patients is estimated to be $746,070 CAD per decedent, or roughly $33.6 million aggregated across all IBD decedents of working age. In a US study of caregivers of children, the average unadjusted annual work loss was 214 hours for caregivers of Crohn’s disease patients and 170 hours for caregivers of children without IBD, translating to an additional $1122 in lost productivity for caregivers of persons with Crohn's disease. Canadian studies have reported complementary and alternative medicines (CAMs) use in 56% to 74% of people with IBD. A US national survey study estimated annual per-person out of pocket costs of $1603 USD for Crohn’s disease patients and $1263 USD for ulcerative colitis patients, which were substantially higher than in persons without IBD. Gaps in Knowledge and Future Directions Canadian-specific data on indirect health-related costs of IBD is sparse across all domains of indirect costs. In particular, the rates of absenteeism, presenteeism and premature retirement among IBD patients living in Canada require further study to gauge more accurately the indirect health-related costs of IBD in Canada. Indirect costs relating to decreased professional development, caregiver burden and out-of-pocket purchases among IBD patients are largely unknown and require further study. Indirect costs incurred by Canadian children with IBD and their families or caregivers are largely unknown.

Approximately one in every 160 seniors live with IBD. Due to the fact that IBD has no known cure, and thus patients diagnosed at younger ages will carry their disease with them into their senior years, the number of senior IBD patients is rising significantly in Canada. Seniors with IBD present unique challenges for care. Patients with IBD will experience greater comorbid conditions resulting from their advancing age and longer disease duration. Risks associated with IBD-related surgeries and complications from other illnesses associated with age and their medications further complicate treatment options and may lead to higher healthcare utilization. Healthcare providers need to be prepared to work in multidisciplinary teams with other specialists in order to address the complexity and comorbidities of seniors with IBD. Highlights 1. Approximately one out of every 160 individuals over the age of 65 in Canada is living with IBD. 2. The rising prevalence of IBD in seniors results from new diagnoses and advancing age of previously diagnosed patients with IBD. 3. Patients with IBD will experience greater comorbid conditions resulting from their advancing age and longer disease duration. 4. As the IBD population ages, the proportion of seniors with IBD will increase in gastroenterology clinics. 5. The care of seniors with IBD brings unique challenges with respect to therapeutic decision-making. Key Summary Points 1. Approximately 0.6% of seniors in Canada live with IBD. 2. In Ontario, the prevalence of IBD among seniors increased by 5.2% per year, which outpaced the 3.9% per year rise observed in nonseniors. 3. Approximately 15% of IBD patients are newly diagnosed after the age of 65 years. 4. The incidence of IBD in seniors ranged from 16.5 to 18.9 per 100,000 in Canada. 5. In Ontario, the diagnosis of ulcerative colitis in seniors was double that of Crohn’s disease. 6. Clinical presentation of seniors with Crohn’s disease is unique with a higher likelihood to present with isolated colonic disease without fistulizing disease or extra-intestinal manifestations as compared with those diagnosed at a younger age. 7. Seniors with IBD are less likely to have outpatient visits relating to their IBD as compared with younger patients with IBD. 8. Among individuals diagnosed over the age of 65, the 10-year risk of intestinal surgery was 7% to 19% for ulcerative colitis and 31% for Crohn’s disease. 9. Seniors who undergo intestinal resections for their IBD have significantly higher postoperative complications and mortality as compared with younger IBD patients undergoing surgery. 10. The use of anti-TNF agents in seniors is lower for Crohn’s disease (4.0%) and ulcerative colitis (2.3%) as compared with younger individuals with IBD. However, the rate of use of biologics is increasing over time. 11. Therapeutic decision-making in seniors with IBD is challenging due to their comorbid conditions. 12. Seniors who use thiopurines have a higher risk of lymphoma (5.4 per 1000 person-years) as compared with IBD patients younger than 50 (0.37 per 1000 person-years) exposed to thiopurines. 13. Newer gut-selective α4β7 integrin inhibitors may be a safer choice for seniors due to potentially lower risk of infection and cancer. 14. Due to multiple comorbidities, seniors with IBD may struggle with polypharmacy that can lead to drug interactions and reduced medication adherence. 15. Persons between 65 and 79 of age with IBD on average cost the healthcare system $5298 per year, which is higher than age-matched controls. Gaps in Knowledge and Future Directions 1. Administrative healthcare databases are more likely to misclassify senior patients with IBD. Future research is necessary to improve the identification of senior patients with IBD in databases. 2. Gastroenterologists will need to contend with an older IBD population with greater comorbidities. Research focusing on defining the burden of comorbidities in senior IBD patients is needed for healthcare resource utilization planning. 3. The use of anti-TNF in senior patients is lower than in younger individuals with IBD. Future research should evaluate trends in using biologics in the senior population with the advent of newer biologics such as integrin and other cellular adhesion molecule inhibitors. 4. Polypharmacy is a challenge for senior IBD patients. Future research should focus on interventions to simplify drug regimens and administration for senior patients. 5. Senior individuals with IBD cost the healthcare system more than age-matched controls. However, research is necessary to establish the IBD-attributable cost to the healthcare system and the indirect cost to society.

Inflammatory bowel disease (IBD) has a substantial impact on quality of life. It causes considerable personal, emotional and social burdens. The impact of IBD on quality of life cannot readily be quantified as a cost; however, the impact places a significant burden on the patient and caregivers. Numerous studies have shown that health-related quality of life is impaired in patients living with IBD as compared with the general population. While disease activity and severity is an important driver of physical and mental health–related quality of life, patients may experience psychological distress even during clinical remission. Reduced quality of life can impact persons living with IBD as they pursue employment, family planning and personal milestones. Further, the impact of IBD extends to the patient influencing the quality of lives of those around them, including their caregivers. Improving quality of life requires a multidisciplinary approach that includes screening for and managing psychological distress. Adaptive coping mechanisms help manage illness perceptions and reduce psychosocial distress. Highlights Health-related quality of life (HRQOL) is an important measure of the global impact of IBD on a person’s physical, mental and emotional well-being. Persons living with IBD have significantly lower HRQOL compared with that of the general population. Inflammatory bowel disease often affects individuals as they pursue employment, family building and personal milestones. Inflammatory bowel disease affects the quality of life (QOL) of those afflicted and their caregivers. Access to multidisciplinary, collaborative, chronic disease models of care improves the HRQOL of people living with IBD. Key Summary Points Inflammatory bowel disease impairs HRQOL by inhibiting need fulfillment (i.e., self-esteem, relationships, nutrition, hygiene and security) and causing psychological distress. Inflammatory bowel disease impairs interpersonal relationships, life activities, social participation and mental well-being. Patient symptoms like diarrhea and abdominal pain reduce HRQOL. While disease severity is an important driver of physical and mental HRQOL, patients experience psychological distress even during clinical remission. Psychological distress impairs work productivity and disrupts social activities and relationships. Patients with IBD experience emotional distress relating to factors such as loss of bowel control, impairment of body image, fear of sexual inadequacy, social isolation, fear of dependency, concern about not reaching one’s full potential and fear of stigmatization. Families with children with IBD have impaired QOL as a collective—for example, parental stress from medical factors and child’s perceived stress. Patients’ perception of their illness affects their ability to adjust to a diagnosis of IBD. Adaptive coping mechanisms help manage illness perceptions and reduce psychosocial distress. Biologics are associated with improvement in long-term HRQOL in people with IBD. Patients with IBD should have access to multidisciplinary care, including mental health practitioners, to screen for and manage psychological distress. Gaps in Knowledge and Future Directions Patients with IBD experience emotional distress that reduces HRQOL. Clinical tools are necessary to identify the key factors causing psychological distress in patients with IBD. HRQOL is reduced in individuals with IBD and their families. Studies should evaluate the cumulative burden of IBD on HRQOL in patients with IBD and their caregivers. Patient self-perception of their IBD influences their HRQOL. Clinical studies of interventions that improve adaptive coping are needed to reduce psychosocial distress. Multidisciplinary care including a psychologist to screen for and manage psychosocial risk and psychological distress should be evaluated in IBD clinics.

Canada has among the highest incidence and prevalence of inflammatory bowel disease (IBD) in the world. After decades of rising incidence of IBD in Canada during the 20th Century, the prevalence of IBD in 2018 is 0.7% of the Canadian population. Forecasting models predict that prevalence of IBD will continue to rise to 1.0% of the population by 2030. In 2018, the number of Canadians living with IBD is approximately 270,000 and is predicted to rise to 403,000 Canadians in 2030. Inflammatory bowel disease affects all age groups with adolescents and young adults at highest risk of diagnosis. Canadians of all ethnicities are being diagnosed with IBD including known high-risk groups such as Ashkenazi Jews and offspring of South Asian immigrants who were previously thought to be low risk. Moreover, IBD has evolved into a global disease with rising incidence in newly industrialized countries in Asia and South America. The causes of IBD remain unsolved; however, the high rates of disease in Western countries and its emergence in newly industrialized countries suggest that environmental factors associated with urbanization, modernization, or Western diets may be pertinent to understanding the pathogenesis of the disease. Highlights 1. Canada continues to have among the highest prevalence of IBD in the world. 2. Today, approximately 270,000 Canadians live with IBD. By 2030 it is estimated that nearly 403,000 Canadians will have a diagnosis of IBD. 3. Inflammatory bowel disease has become a worldwide disease with increasing rates in Asia, Africa, and South America—continents where IBD was rarely diagnosed prior to 1990. 4. The causes of IBD are unknown, but the high rates of disease over the past 60 years in Western countries and the emergence of disease in developing countries suggest that factors associated with urbanization, modernization, or Western diets may be pertinent to understanding the pathogenesis of the disease. 5. Many of the leading hypotheses as to the causes of IBD tie in with alteration of the gut microbiome, the suite of organisms that reside in the bowel and maintain bowel health throughout life. Key Summary Points 1. The incidence (the number of new diagnoses annually) of IBD rose throughout the 20th century in Canada and then stabilized at the turn of the 21st century. 2. The prevalence (the total number of diagnosed persons in the population) of IBD in Canada is among the highest in the world. 3. Today, 270,000 (0.7%, or 7 in 1000) Canadians are estimated to live with IBD. By 2030, that number is expected to rise to 403,000 Canadians (1% or 1 in 100). 4. Inflammatory bowel disease can be diagnosed at any age. However, the age groups that are most likely to be diagnosed are adolescents and young adults from 20 to 30 years of age. 5. Inflammatory bowel disease in Canada affects the lives of Canadians of all ethnicities, including known high-risk groups such as Ashkenazi Jews, and those thought previously to be at low risk, such as first-generation offspring of South Asian immigrants. 6. Canadian health policy makers will need to prepare the Canadian health care system for the rising burden of IBD. 7. As newly industrialized countries in Asia, Africa, and South America are transitioning to a Westernized society, IBD has emerged and its incidence in these countries is rising rapidly. 8. The gut microbiome includes microorganisms that maintain digestive health. Thus, changes in the microbiome, which may change the immune system’s response to triggers, may be important in initiating and perpetuating IBD. 9. A number of factors can alter the gut microbiome and early childhood may be a particularly important time such that breastfeeding, early life diet, use of antibiotics, infections, and other environmental exposures may impact the gut microbiome in such a way that facilitates developing IBD. 10. Smoking is associated with an increased risk and worsening disease course of Crohn’s disease. Quitting smoking is associated with an increased risk of developing ulcerative colitis. Therefore, never initiating smoking can mitigate the risk for IBD. Educational programs aimed at those at-risk for IBD should emphasize the risk of starting to smoke tobacco. 11. Modifying exposure to environmental risk factors associated with the Westernization of society (e.g., Western diet and lifestyles) may provide an avenue for reducing the risk of IBD in Canada and worldwide. Gaps in Knowledge and Future Directions 1. While the incidence of IBD appears to be stabilizing in some regions in Canada, IBD may be occurring more frequently in certain populations such as in children, South Asians, Ashkenazi Jews, and immigrants. Future research should focus on the changing demographics of IBD in Canada. 2. The prevalence of IBD will rise steadily over the next decade. To enable better health care system planning and to respond adequately to the increasing burden of IBD, ongoing surveillance of the epidemiology and health services utilization of IBD in Canada is necessary. 3. Most studies have focused on the mortality associated with IBD. Future research is necessary to assess health-adjusted life expectancy and overall life expectancy for those living with IBD. 4. Analyses of resources, infrastructure, and personnel need to be modeled into the future in order to prepare our health care system for the rising burden of IBD. 5. Research on the interaction between genes, microbes, and our environment will inform our understanding of the pathogenesis of IBD, information necessary to prevent IBD in the future.

Canada has among the highest rates of childhood-onset IBD in the world. Over 7000 children and youth under 18 years old are living with IBD in Canada, and 600 to 650 children under 16 years old are diagnosed annually. While the peak age of onset of IBD is highest in the second and third decades of life, over the past two decades incidence has risen most rapidly in children under 5 years old. The treatment of children with IBD presents important challenges including therapeutic choices, risk of adverse events to medications, psychosocial impact on the child and family, increased cost of health care and the implications of the transition from pediatric to adult care. Despite the unique circumstances faced by children and their families, there is a lack of research to help understand the causes of the rising incidence and the best therapies for children with IBD. Scientific evidence—and specifically clinical trials of pharmaceuticals—are too often extrapolated from adult research. Health care providers must strive to understand the unique impact of childhood-onset IBD on patients and families, while researchers must expand work to address the important needs of this growing patient population. Highlights In 2018, there are over 7000 children and youth under 18 years old living with IBD in Canada, and 600 to 650 young children (under 16 years) diagnosed every year. The number of children in Canada living with IBD is growing rapidly, increasing 50% in the first decade of the 21st century. Inflammatory bowel disease is still rare in children younger than 5 years of age, but it is occurring in such young children more often than in the past. Children with IBD are different from adults. For example, delayed growth, extent of disease and difficulties encountered during adolescence are all unique to the pediatric experience. We must consider the psychosocial well-being of both children and their families, given that caring for a child with IBD can affect the global functioning of families. Treatment approaches in children sometimes differ from those in adults. However, to date, all effective therapies in adults have also been effective in children. There is great need for clinical trials of new therapies in children so that they have equal access to emerging treatments and optimal pediatric dosing can be established. Key Summary Points Rates of new diagnoses in children under 16 years old were increasing most rapidly in Ontario (increased 5.8% per year) and Quebec (increased 2.8% per year). Nova Scotia has the highest rate of pediatric IBD, with lower rates in Quebec and Ontario. However, even Ontario and Quebec have higher rates of pediatric IBD than most countries in the world. Inflammatory bowel disease is caused by the interaction between genes, environmental risk factors, the microbiome and the immune system. Since children experience shorter exposures and possibly fewer environmental risk factors, the interaction between these risk factors and genes may be stronger with childhood-onset IBD. The microbiome is mostly established in early childhood and is affected by a number of factors such as environment, diet, pregnancy/delivery factors and antibiotic use. Changing the microbiome to a healthier state may prevent the disease and may also be a novel therapeutic target to treat active inflammation in children with IBD. Children with IBD are different from adults. They are more likely to have extensive involvement of their intestines, especially in ulcerative colitis, and are at risk for growth impairment, osteoporosis, and psychosocial difficulties affecting their families. Children with IBD may incur more direct health costs for treatment of their IBD compared with adults. However, this is not universally true for all children because those who are very young at diagnosis (2 to 6 years old) may have milder disease or respond better to medications. This may result in decreased use of the health system, fewer hospitalizations and less risk of surgery than older children and adolescents. The choice of treatments for children with IBD may be different from that of adults. It is important to consider pediatric-specific disease considerations. Delayed growth, deficient bone development, psychosocial well-being of the child and family, disease extent, disease severity and risk of poor outcomes during transition from pediatric to adult health care are all important considerations when choosing the best treatment for children and adolescents. While the medications used are similar in children and adults with IBD, research to assess the effectiveness and safety of these medications in children (especially very young children) is sparse. Children with IBD may be more responsive to treatment than adults because they are more likely to have inflammatory (rather than stricturing) disease. Therefore, treating the inflammation earlier in the course of disease may prevent long-term complications such as strictures, obstruction, need for surgery and need for hospitalization. Some medications used in IBD have unique or more pronounced risks in children compared with adults. For example, chronic prednisone use is associated with growth impairment and stunting in children. Anti-TNF biologics are the only medications proven to improve growth in children with Crohn’s disease and should be considered early in the course of disease in patients with severe IBD or those with marked growth impairment at the time of diagnosis. Some medications are used differently, depending on the sex of the patient. For example, azathioprine (with or without biologics) is associated with hepatosplenic T cell lymphoma (and other forms of lymphoma) in adolescent and young adult males more often than females. Methotrexate is associated with birth defects in the growing fetus and therefore should be avoided in adolescent and adult women of child-bearing age who are not using two or more forms of birth control. A small group of children, typically presenting in the first two years of life, have single-gene mutations that cause an IBD-like bowel disease and also immune system dysfunction. These patients may not respond to traditional IBD medications and may require therapies such as bone marrow transplant. Canada is leading research efforts to investigate, diagnose and treat this small group of very vulnerable children. Inflammatory bowel disease (especially when it is active) can affect school attendance, social interactions, concentration and learning. Schools should be aware of the implications of IBD and make allowances for these factors in children with active inflammation and symptoms to optimize their chances of academic and social success. Gaps in Knowledge and Future Research Directions We have limited knowledge on what causes IBD in children and why rates are rising most rapidly in young children. We must better understand the interaction between genes, the environment, the immune system and the microbiome in order to better prevent and treat the disease. Treatment for infants with IBD-like illnesses and single-gene mutations is limited. Future research should work towards identifying these children and learning how best to treat them. There are few clinical trials for biologics in children, and most exclude very young children. Support for such trials is important to understand whether the treatments work, how they should optimally be given and whether they are safe for young children with IBD. Considering the effectiveness of dietary therapies for children with Crohn’s disease (exclusive enteral nutrition), we should work to understand how diet affects intestinal inflammation and the microbiome in order to better use dietary therapies to treat IBD. Health services researchers, health care providers and policy-makers should work together to understand why variation in the access to treatment and medical care of children with IBD exists. We must work together to improve the quality of care provided to these children and ensure they have the highest quality of care. Psychosocial implications of IBD in children and their families are of importance to long-term and overall well-being. Children with a chronic, incurable disease are at risk for mental illness associated with their disease. We should design interventions to improve the psychosocial status, mental health and quality of life of children with IBD and their families. While nonlive immunizations are safe for children with IBD, we must understand how to improve their effectiveness in children who are immunosuppressed. While the peak onset of IBD occurs in the second or third decades of life, the frequency of new diagnoses in younger children is rising rapidly. In Canada, the fastest growing group of newly diagnosed people with IBD are children aged under 5 years (termed ‘very early onset [VEO] IBD). These young children have not been included in clinical trials of new medications, resulting in a lack of scientific evidence of safety and effectiveness of treatments in this group, and clinical experience has shown that they do not respond to usual medications used for the majority of children with IBD. Providing children with IBD with high-quality care and social support also poses other challenges to care providers, families and the health system. This section will focus on the unique challenges facing Canadian children with IBD. A complete overview of the objectives, working committees and methodology of creating the report can be found in the supplemental file, Technical Document.

Background Budesonide is an oral glucocorticoid designed for the treatment of inflammatory bowel disease (IBD) that may reduce systemic adverse events (AEs). This review examined the efficacy and safety of budesonide for the induction and maintenance of clinical remission in Crohn’s disease (CD). Methods MEDLINE, EMBASE, other electronic databases, reference lists and conference proceedings were searched to November 2017 to identify randomized controlled trials of budesonide. Outcomes were the induction and maintenance of remission at eight weeks and one year, respectively, as well as corticosteroid-related AEs and abnormal adrenocorticotropic hormone (ACTH) tests. Pooled relative risks (RRs) and 95% confidence intervals (CIs) were estimated using random effects models. Results Thirteen induction and 10 maintenance trials were included. Budesonide 9 mg/day was more effective than placebo (RR 1.93; 95% CI, 1.37–2.73; GRADE: moderate) but less effective than conventional steroids (RR 0.85; 95% CI, 0.75–0.97; GRADE: moderate) to induce remission. Corticosteroid-related AEs occurred less often with induction doses of budesonide than steroids (RR 0.64; 95% CI, 0.54–0.76; GRADE: moderate); budesonide did not increase AEs relative to placebo (RR 0.97; 95% CI, 0.76–1.23; GRADE: moderate). Budesonide 6 mg/day was not different from placebo for maintaining remission (RR 1.13; 95% CI, 0.94–1.35; GRADE: moderate). Both induction (GRADE: low for 3 mg/day, moderate for 9 mg/day) and maintenance budesonide treatment (GRADE: very low for 3 mg/day, low for 6 mg/day) increased the risk of an abnormal ACTH test compared with placebo, but less than conventional steroids (GRADE: very low for both induction and maintenance). Conclusion For induction of clinical remission, budesonide was more effective than placebo, but less effective than conventional steroids. Budesonide was not effective for the maintenance of remission. Budesonide was safer than conventional steroids, but the long-term effects on the adrenal axis and bone health remain unknown.

BACKGROUND: Incidence of Inflammatory Bowel Disease (IBD)—Crohn’s Disease (CD) and ulcerative colitis (UC)—is decreasing in some provinces, but increasing in pediatrics. Even with this decrease in incidence, prevalence will continue to rise until incidence equals to mortality. Decision makers require accurate data on the current and future burden of IBD for resource planning to ensure IBD patients receive proper care. AIMS: 1. Assess current and forecast future IBD incidence trends; 2. determine IBD mortality rates; and, 3. use mortality to calculate the threshold that incidence must approximate to stabilize prevalence. METHODS: Using population-based data from Alberta, annual incidence (per 100,000 persons) is calculated from 2010 to 2015, stratified by pediatric (

Background The transfer of information in a medical summary letter is a key aspect of the transition of adolescent patients with IBD from pediatric to adult care. The existing template from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) is nearly 20 years old, and the many intervening changes to the care of children with IBD necessitate a new template to reflect modern care. Aims We developed a standardized medical summary template based on the feedback of adult and pediatric IBD health care providers. Methods We purposively sampled gastroenterologists (GIs) or nurse practitioners (NPs) caring for patients with IBD in Montreal, Ottawa, Toronto or Vancouver and invited them to take part in focus group discussions. Gastroenterologists caring for Results Content areas of importance (see Table) were: patient/disease characteristics, therapeutics history, clinical history and current status, noteworthy investigations, history of complications, family history, immunization history, and psychosocial history. In addition, the template addressed health system process factors (i.e., urgency of transfer, mode of delivery, confidentiality) to ensure a seamless transfer to adult care. Conclusions The standardized medical summary template should be used by pediatric providers to ensure that essential information is sent to the receiving adult provider. Funding Agencies Transition des patients avec Crohn et colite (TRACC) program

Background Health research in Canada is funded by government, health charities, foundations and industry. We investigated levels of IBD research funding and the scientific impact of this research in Canada between 2013 and 2017. Methods An analysis of global and Canadian funding in IBD research was conducted using the Canadian Institutes of Health Research (CIHR) Funded Research Database and UberResearch’s Dimensions platform. Examples of priority-driven and investigator-initiated IBD research in Canada are provided. Bibliometric analysis was used to assess the quality of IBD research output in Canada. Results Total funding for IBD research Canada between 2013 and 2017 was over $119 million Canadian dollars (CAD), with CIHR, the largest funder, contributing almost $66 million CAD, and Crohn’s and Colitis Canada, investing more than $32 million CAD. This ranks Canada fourth internationally. A comparative analysis indicates that publications by Canadian IBD researchers have a greater impact than other Canadian and international comparators. When productivity and impact in IBD research are combined, Canada is among the top three in the world. Conclusions Investment in IBD research in Canada has resulted in the development of a strong collaborative group of researchers producing impactful, world-class research. On all measures of academic productivity and influence, Canada ranks in the top two or three internationally. The challenges ahead are to continue to fund innovative IBD research and grow the next generation of IBD researchers while moving research findings into changes in health policy and practice in order to benefit affected patients and their families—and ultimately, to find the cause(s) and identify the cure(s).

Canada has among the highest rates of IBD in the world, and the number of people living with these disorders is growing rapidly. This has placed a high burden on the health care system and on the Canadian economy—a burden that is only expected to grow in the future. It is important to understand IBD and its impact on Canadian society in order to appropriately plan for health care expenditures, reduce the burden on patients and their families, and improve the quality of life for those afflicted with IBD. In Canada, there is a lack of public awareness of the impact of Crohn’s disease and ulcerative colitis. Raising awareness is crucial to reducing the social stigma that is common with these diseases and to help individuals maximize their overall quality of life. A better public understanding of IBD can also help to raise and direct funds for research, which could lead to improved treatments and, ultimately, to a cure. This report from Canadian clinicians and researchers to Crohn’s and Colitis Canada makes recommendations aimed at the public, policy-makers, scientific funding agencies, charitable foundations and patients regarding future directions for advocacy efforts and areas to emphasize for research spending. The report also identifies gaps in knowledge in the fields of clinical, health systems and epidemiological research.

Direct health care costs of illness reflect the costs of medically necessary services and treatments paid for by public and private payers, including hospital-based care, outpatient physician consultations, prescription medications, diagnostic testing, complex continuing care, and home care. The costs of caring for persons with inflammatory bowel disease (IBD) have been rising well above inflation over the past fifteen years in Canada, largely due to the introduction and penetration of expensive biologic therapies. Changing paradigms of care toward frequent patient monitoring and achievement of stricter endpoints for disease control have also increased health services utilization and costs among IBD patients. While the frequency and costs of surgeries and hospitalizations have declined slightly in parallel with increased biologic use (due to better overall disease control), the direct medical costs of care for IBD patients are largely dominated by prescription drug costs. Introduction and penetration of biosimilar agents (at a markedly lower price point than the originator drugs) and increasing gastroenterologist involvement in the care of IBD patients may help to balance rising health care costs while improving health outcomes and quality of life for IBD patients. Ultimately, however, the predicted rise in the prevalence of IBD over the next decade, combined with increasing use of expensive biologic therapies, will likely dictate a continued rise in the direct costs of IBD patient care in Canada for years to come. In 2018, direct health care costs of IBD are estimated to be at least $1 billion Canadian dollars (CAD) and possibly higher than $2 billion CAD. Highlights 1. In Canada, the direct cost of caring for people living with IBD is estimated in 2018 to be close to $1.28 billion (roughly $4731 per person with IBD). 2. The costs of caring for people living with IBD are dominated by prescription drugs, followed by hospitalization costs. There has been a shift away from hospitalizations and toward pharmaceuticals as the predominant driver of direct health care costs in IBD patients, due to the introduction and widespread use of expensive biologic therapies. 3. The rates of hospitalizations and major abdominal surgeries have been declining in IBD patients in Canada over the past two decades, possibly due to penetration of biologic therapies and advances in patient management paradigms. 4. Inflammatory bowel disease patients cared for by gastroenterologists have better outcomes, including lower risks of surgery and hospitalization. Canadians who live in rural and underserviced areas are less likely to receive gastroenterologist care, potentially due to care preferences or poorer access, which may result in poorer long-term outcomes. 5. Introduction of biosimilar agents at a lower price point than originator biologic therapies, increased gastroenterologist care of IBD patients, and improvements in IBD care paradigms may balance overall treatment costs while improving health outcomes and quality of life for IBD patients. However, in the long-term, direct costs of care may continue to increase, dictated by a rising IBD prevalence and increasing use of biologic therapies. Key Summary Points 1. The costs of health care for patients with IBD are more than double those without IBD. 2. Prescription drug use accounts for 42% of total direct costs in IBD patients, and costs to treat IBD continue to rise due to increased use of existing biologic therapies and the introduction of several new biologic therapies in recent years. 3. In Manitoba, the mean health care utilization and medication costs for persons with IBD in the year before beginning anti-TNF therapy was $10,206 and increased to $44,786 in the first year of therapy. 4. Biosimilar agents to anti-TNF drugs are now entering the Canadian marketplace and may result in cost savings in patients using biologic agents to treat their IBD. 5. Timely gastroenterologist care has been associated with reduced risks of requiring surgery and emergency care among ambulatory IBD patients and a reduced risk of death among hospitalized patients with ulcerative colitis. 6. Inflammatory bowel disease care provided by gastroenterologists has increased over the past two decades. Even then, the average time from symptom onset to IBD diagnosis exceeds six months, and only one-third of IBD patients receive continuing care with a gastroenterologist during the first five years following diagnosis. 7. Senior (age ≥65), rural-dwelling, and non-immigrant IBD patients have less frequent gastroenterologist care than other groups. 8. About one in five adults with Crohn’s disease and one in eight adults with ulcerative colitis are hospitalized in Ontario every year. Hospitalizations are most common during the first year following IBD diagnosis. Children with IBD (age

The burden of extra-intestinal disease is high in patients with IBD, some of whom respond to or are prevented by treating the bowel inflammation, whereas others require specific treatment because they are independent of the underlying bowel inflammation. Among the most common extra-intestinal manifestations are other chronic immune-mediated diseases such as erythema nodosum, ankylosing spondylitis and primary sclerosing cholangitis. Patients with IBD are at higher risk of complications in other organ systems such as osteoporosis, venous thromboembolism and cardiovascular disease. In addition, patients with IBD have a higher risk of cancer, including colon cancer. Mental health comorbidity is important and common in IBD though not always recognized and managed. Consequently, patients and care providers need to be vigilant in the surveillance of extra-intestinal manifestations and complications of IBD. Highlights The burden of extra-intestinal disease is high in patients with IBD.Immune-mediated inflammatory diseases (IMIDs) commonly coexist with patients with IBD and the activity of IMIDs can be either dependent or independent of bowel inflammation.Patients with IBD can be diagnosed with coexisting diseases that affect every organ, including bones, blood, heart, liver, and others.Patients with IBD are at increased risk of cancer, including colon cancer, caused by their bowel inflammation, cholangiocarcinoma due to primary sclerosing cholangitis, and rarely lymphoma related to immunosuppressive medications.The best way to prevent or reduce the burden of many of the extra-intestinal disease is to treat the inflammation of IBD, however some extra-intestinal inflammatory diseases run courses that are independent of the intestinal disease activity. Key Summary Points Patients with IBD are often burdened with extra-intestinal manifestations, some of which respond to or are prevented by treating the bowel inflammation whereas others require specific treatment because they are independent of the underlying bowel inflammation.Other immune-mediated inflammatory diseases (IMIDs) can coexist with IBD.Some IMIDs run an independent course from the bowel inflammation of IBD, such as ankylosing spondylitis, iritis, and primary sclerosing cholangitis.Immune-mediated inflammatory diseases that often have courses that match the bowel inflammation of IBD include erythema nodosum and peripheral arthritis.Immune-mediated inflammatory diseases such as multiple sclerosis and psoriasis have been associated with IBD. However, these conditions may also emerge as complications of therapy for IBD.Patients with IBD are at risk for venous thromboembolic disease, which occurs at a rate of one per 200 person-years.Venous thromboembolic disease can be reduced by treating patients admitted to hospital with an IBD diagnosis with venous thromboembolism prophylaxis.Arterial vascular disease is also increased in IBD patients, including both coronary artery disease and cerebrovascular disease.Osteoporosis is more prevalent in IBD patients and translates to a 40% increased risk of fracture. While corticosteroids increase the risk of osteoporosis, patients with IBD can also develop metabolic bone disease independent of corticosteroid use.Persons with IBD are more likely to be infected with Clostridium difficile than community controls and often without prior antibiotic exposure.Mental health comorbidity is important in IBD. Depression may antedate a diagnosis of IBD by several years and increase post-diagnosis. High stress can exacerbate symptoms in IBD but does not necessarily increase bowel inflammation.Fatigue is a common symptom in IBD and is not always explained by depression, active inflammatory disease or other apparent factors.The risk of colorectal cancer is increased twofold in Crohn’s colitis and in ulcerative colitis and 10-fold in persons with primary sclerosing cholangitis with colitis.Primary sclerosing cholangitis runs a course independent of IBD and can progress to cirrhosis, liver transplantation or death. Patients with IBD and primary sclerosing cholangitis are at higher risk of cholangiocarcinoma, which is often fatal.The risk of lymphoma may be increased in older males with Crohn’s disease and in patients using thiopurines or anti-TNF therapy.The risk for intensive care unit admission is nearly twofold higher for patients with IBD and higher in Crohn’s disease than in ulcerative colitis. Risk factors for intensive care unit admission from the year before admission included cumulative corticosteroid use and IBD-related surgery. Gaps in Knowledge and Future Directions Patients with IBD are often burdened with extra-intestinal disease. Future research should determine the collective frequency and added costs of living with extra-intestinal disease.Immune-mediated inflammatory diseases are commonly codiagnosed with IBD. Future research should focus on the pathogenesis connecting coexisting IMIDs with IBD.Care pathways that support the investigation and mitigation of extra-intestinal disease are needed. For example, when and how ambulatory patients with IBD should receive prophylaxis against venous thromboembolic disease is unknown.With an aging IBD population, the burden of extra-intestinal disease should be studied in the context of comorbidities of advancing age.Increasing mental health screening and access to mental health care should be a goal of IBD management.

BACKGROUND: An important target in the management of pediatric inflammatory bowel disease (IBD) is normal linear growth and pubertal development. Greater awareness of IBD and more effective therapies are anticipated to reduce the prevalence of linear growth impairment as a complication of chronic intestinal inflammation. AIMS: To evaluate the current magnitude of linear growth impairment at diagnosis in pediatric Crohn’s disease (CD) and ulcerative colitis (UC). METHODS: Since April 2014, the Canadian Children IBD Network (CIDsCANN) inception cohort study prospectively enrolled patients aged

BACKGROUND: Canada’s large geographic area and low population density poses challenges in access to specialized healthcare for remote and rural residents. Inflammatory bowel disease (IBD) (Crohn’s disease (CD) and ulcerative colitis (UC)) is less common among rural residents, however disparities in care and outcomes may exist. AIMS: Compare health services use and markers of disease control (hospital admissions and surgeries) in rural and urban IBD patients in Canada using population-based health administrative data. METHODS: Validated algorithms identified all incident cases of IBD from administrative data in 3 provinces: Alberta (AB) 1999–2008, Manitoba (MB) 1999–2010, Ontario (ON) 1999–2010. We compared rural to urban residents for time to diagnosis, IBD-specific hospitalization, outpatient visits, emergency department (ED) use (ON only), surgical resections (CD) or colectomy (UC), and gastroenterologist (GI) care. Rural/urban status was based on Metropolitan Area and Census Agglomeration Influenced Zones. Multivariable regression compared outcomes in rural/urban residents, controlling for confounders (Table footnote). Provincial results were meta-analyzed to produce overall estimates. RESULTS: See Table. 37,018 urban and 6656 rural residents with incident IBD were included. Rural patients had fewer GI visits, and a smaller proportion of their IBD-specific care provided by GI (39.1% vs 61.4%, P

BACKGROUND: Colonoscopy decreases the incidence of colorectal cancer (CRC) and CRC-related death, primarily through timely detection and treatment of advanced colorectal neoplasms (ACNs), including CRC and high-risk adenomas (HRA). Unfortunately, risk stratification methods for colonoscopy are poor, and less than 20% of persons over age 50 who undergo colonoscopy are diagnosed with ACNs. Current guidelines do not adequately account for the simultaneous contribution of multiple major and minor risk factors and protective factors for developing ACNs. Combined with increasing demands for colonoscopy, Canadians now faces wait times that greatly exceed recommended targets, escalating colonoscopy-related costs and poor value for the money spent on these procedures. Widespread implementation of population-based FIT screening in average-risk patients in coming years will compound these problems. AIMS: To derive prediction models that discriminate between individuals who are likely or unlikely to harbour ACNs. METHODS: We studied 11,719 consecutive persons aged 50 years or older who underwent outpatient colonoscopy at The Ottawa Hospital between 2008 and 2012 for low-to-moderate risk indications, including non-life-threatening signs or symptoms, personal history of adenomas, family history of CRC and average-risk screening. We excluded individuals who had high risk or rare indications, as well as those who had incomplete colonoscopy, poor bowel preparation, or important missing information. We obtained model variables through chart review and linkage to Ontario health administrative databases. We tested 22 candidate predictors, encompassing colonoscopy indication, age, sex, residential setting, household income, co-morbidity burden, cancer history, and prior colonoscopy and polypectomy exposure. We used multivariable logistic regression with stepwise selection to derive our final models. We tested the performance of our primary models in multiple subgroups. RESULTS: Our final models retained eight variables that are easily ascertainable in an office setting. The models showed excellent discriminatory capacity (c-statistic > 0.95) and calibration (p-value > 0.5 for goodness-of-fit test) for CRC in the main cohort and all subgroups, and improved the specificity of colonoscopy for detecting ACNs without significantly impacting sensitivity. Applying the models to our derivation cohort would have allowed for a 25% reduction in colonoscopy volume with a CRC miss rate of < 1% and a HRA miss rate of < 10%. CONCLUSIONS: We have derived predictive models with high discriminatory capacity for ACNs that could help optimize the use of colonoscopy resources in clinical practice. If successfully validated, these models have the potential to improve the clinical utility and cost-effectiveness of colonoscopy. FUNDING AGENCIES: Academic Health Sciences Centres Alternate Funding Plan Innovation Fund (administered by The Ottawa Hospital Academic Medical Association)

BACKGROUND: The prevalence of Inflammatory Bowel Disease (IBD), consisting of Crohn’s disease (CD) and ulcerative colitis (UC), is rising in Canada. Because IBD is a complex and costly disease, estimates of changing prevalence over time are necessary to inform the Canadian healthcare system on the evolving burden of IBD. AIMS: To analyze historical prevalence and predict the future prevalence of IBD in Canada. METHODS: Annual population-based prevalent cohorts from Alberta (2002–2015), Manitoba (1990–2013), Ontario (1999–2014), Quebec (2001–2008), and Nova Scotia (1996–2009) were obtained from the Canadian Gastro-Intestinal Epidemiology Consortium. Data were adjusted based on annual age and sex distribution in Canada. Log binomial regression on adjusted data was performed with either a linear, linear spline, or restricted cubic spline model, depending on model fit, and yielded average annual percentage change (AAPC) with 95% confidence intervals (CI). Predictive models for CD, UC, and IBD to 2030 were calculated for each province, and then combined into a single model for Canada with provincial data from 2002 to 2008. Prediction intervals (PI) were calculated for predicted prevalence. RESULTS: Prevalence of CD, UC, and IBD for each province in 2008 and provincial predicted prevalence in 2018 and 2030 is reported in Table 1. The estimated prevalence of IBD in Canada in 2008 was 489 per 100,000 persons. In Canada, the predicted AAPC after 2008 is: CD: 2.76% (95%CI:2.74–2.78%); UC: 2.90% (95%CI:2.88–2.92%); and IBD 2.88% (95%CI:2.87–2.90%) (Figure 1). The prevalence of IBD in Canada is predicted to climb to 0.95% in 2030 (Table 1, Figure 1), which represents an increase in the number of people with IBD in Canada from 257,564 (95%PI:254,356–260,772) in 2018 to 388,042 (95%PI:381,808–394,276) in 2030. CONCLUSIONS: By 2030, 0.95% of the Canadian population is predicted to have IBD. Clinical and policy driven healthcare innovations are required over the next decade to stem the impact of IBD in Canada and ensure these individuals receive the necessary care. FUNDING AGENCIES: CIHRIzaak Walton Killam Memorial Scholarship; Eyes High Doctoral Recruitment Scholarship

BACKGROUND: Ileal pouch-anal anastomosis (IPAA) is common among individuals with medically-refractory ulcerative colitis and familial adenomatous polyposis syndrome and is often performed during patients’ reproductive years. Female infertility is common after IPAA but is decreased with laparoscopic procedures. Clinical practice guidelines recommend caesarean(C-) section but are based on little evidence. AIMS: Determine recommendations given to pregnant women with IPAA by their gastroenterologist with regard to mode of delivery. METHODS: Canadian gastroenterologists (GIs) were surveyed through the Canadian Association of Gastroenterology in May 2014. The questionnaire included demographic and clinical practice characteristics, and queried GIs on recommendations made to women with IPAA using a clinical vignette. We assessed physician characteristics associated with providing recommendations using a Fisher’s exact test (categorical variables) and Wilcoxon rank-sum test (duration of clinical practice). RESULTS: 57 gastroenterologists responded and had practiced for a median of 9 years (IQR 15). Two-thirds (38/56; 68%) of GIs practiced in an academic centre. Most GIs regularly (29/54; 54%) or sometimes (14/54; 20%) recommended a mode of delivery to women with IPAA of childbearing age. Physicians with ≥200 IBD patients in their practice and ≥10 patients with an IPAA were more likely to provide recommendations (p

BACKGROUND: The Paris classification of pediatric IBD divides “pediatric-onset” IBD (A1, Montreal classification) into A1a (diagnosis

BACKGROUND: Asthma and the inflammatory bowel diseases (IBD) both result from complex gene-environment interactions and share genetic and environmental risk factors. AIMS: To examine the association between asthma and the subsequent development of Crohn’s disease (CD) or ulcerative colitis (UC). METHODS: We performed a population-based case-control study using health administrative data from the province of Alberta. Incident cases of CD and UC were identified using a validated algorithm based on ICD9 (CD 555; UC 556) and ICD10 codes (CD K50; UC K51). An 8-year washout period was used to distinguish incident from prevalent cases for individuals ≥10 years of age at IBD diagnosis; a 3-year washout period was used for those 40 years) was evaluated using a likelihood ratio test. Age-stratified models are presented in the presence of effect measure modification. Logistic regression models were adjusted for age at IBD diagnosis (in the absence of effect measure modification), sex, rural/urban environment, and quintile of median income for individuals living in a dissemination area. A sensitivity analysis was conducted in which the diagnosis of asthma could either precede or follow the diagnosis of IBD. RESULTS: A diagnosis of asthma was associated with increased odds of incident CD (adjusted OR 1.45, 95% CI 1.31 to 1.60) with no effect modification by age at diagnosis (p=0.42). Effect modification by age at diagnosis was observed for UC (p=0.01). Asthma was associated with ulcerative colitis diagnosed at ≤16 years of age (adjusted OR 1.49, 95% CI 1.08 to 2.07) and >40 years of age (adjusted OR 1.57, 95% CI 1.31 to 1.89). There was no association between asthma and UC among individuals diagnosed between ages 17 and 40 (OR 1.05, 95% CI 0.86 to 1.26). Results were consistent in a sensitivity analysis that allowed the diagnosis of asthma to precede or follow the diagnosis of IBD. CONCLUSIONS: Asthma is associated with an increased risk of CD, as well as early- and late-onset UC. This association requires confirmation and investigation into potential preventative strategies to reduce IBD risk, as well as identify individuals with chronic gastrointestinal symptoms who should be investigated for IBD. FUNDING AGENCIES: CIHRAlberta Innovates-Health Solutions

BACKGROUND: Pediatric onset inflammatory bowel disease (IBD) is a high-risk phenotype that requires transfer to an adult gastroenterologist at age 18. Under-developed emotional and cognitive skills in the transition-aged population can affect adherence rates, especially during periods of remission. A recent study evaluating patients with pediatric onset IBD requiring transfer of care to an adult gastroenterologist identified a relatively large lost to adult gastroenterology (GI) follow-up (LTF) group. AIMS: The purpose of this study was to characterize those patients with pediatric onset IBD who are LTF in the first five years of adult care and identify risk factors for their non-compliance. METHODS: This was a population-based retrospective cohort study using health care administrative data from Ontario, Canada. A cohort of patients with pediatric onset IBD was identified and health resource utilization during a 5-year post-transfer period was analyzed. Patients LTF were compared to those patients actively followed by a gastroenterologist in terms of health resource utilization. The primary outcome of this study comprised Emergency Department (ED) utilization. Secondary outcomes included hospitalizations, surgeries, ambulatory visits, endoscopic and radiological investigations. RESULTS: 2043 patients with pediatric onset IBD were identified. 1696 were followed by an adult GI in the post-transfer period. 306 patients were never seen by an adult GI. 41 patients were never seen by any adult health care provider in the post-transfer period. Patients in the loss to follow-up group were significantly younger, more likely to be male, have ulcerative colitis (UC) and reside in an urban environment. Overall, there were no significant differences found in ED use, total ambulatory care visits (aside from the expected drop amongst GI follow-up), hospitalizations, endoscopic procedures or radiological procedures between exposure groups. Multivariable negative binomial logistic regression revealed that the LTF group was less likely to be seen in the ED and admitted to hospital. CONCLUSIONS: A relatively large LTF group with pediatric onset IBD was characterized in this study. 5-year follow-up reveals no evidence of increased health resource utilization. More work is needed to further define this population, identify barriers to follow-up and whether outcomes such as quality of life, productivity etc. are affected by their non-compliance. FUNDING AGENCIES: CCC