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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 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.

We investigate collaboration in a unique context: nongovernmental organizations (NGOs) working together to address a “wicked social problem” in a super-stressed environment. We interviewed NGO leaders involved in HIV/AIDS collaborative initiatives in South Africa. Seven collaborative behaviors were identified. The overarching theme was the influence of interpersonal and interprofessional ties (social capital) on the nature and tone of interorganizational relations. Our findings suggest that collaborative work in this context may differ in three key ways: (1) the timing of stages in the partnership life cycle, (2) the importance and type of trust needed for success, and (3) the interplay between social and collaborative capital.