2023 IMPACT OF IBD REPORT //
The 2023 Impact of Inflammatory Bowel Disease in Canada report is the first wide-ranging examination of the disease and its impact on Canada since 2018. In the five years elapsed between the reports, researchers have uncovered new findings about the disease, the people who live with it, and how Canada can take strides to improve care. Those discoveries are presented in the latest report, which serves as a comprehensive, data-laden resource about the impact Crohn’s disease and ulcerative colitis have across the country.
This is a report from the scientific community to Crohn’s and Colitis Canada (CCC), and the information and recommendations put forth by its authors inform our efforts to improve outcomes for people living with Crohn’s or colitis.
For more information, Please visit the 2023 IBD Report on CCC's Website at: https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/reports/2023-IBD-Report-English-LR.pdf
Windsor JJ, Kuenzig ME, Murthy SK, Bitton A, Bernstein CN, Jones JL, Lee K, Targownik LE, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Im JHB, Davis T, Weinstein J, Goddard Q, Benchimol EI, Kaplan GG. The 2023 Impact of Inflammatory Bowel Disease in Canada: Executive Summary. Journal of Canadian Association of Gastroenterology 2023 Jun 1;6(Suppl 2):S1-S8.
The burden of IBD (i.e., associated direct and indirect costs, prevalence of disease, personal impact to the individual and to caregivers) continues to increase in Canada. The prevalence of IBD has increased since Crohn's and Colitis Canada's 2018 Impact of IBD report from an estimated 270,000 Canadians living with IBD in 2018 to an estimated 322,600 Canadians living with IBD today in 2023. Consequently, associated costs of IBD have also dramatically increased from an estimated $2.57 billion in 2018 to an estimated $5.38 billion in 2023; this increase is due to multiple factors including increased prevalence of disease, inflation, and additional identified factors (e.g., presenteeism, costs of childcare). Beyond the economic impact of IBD, these diseases have a significant impact on people living with the disease and their caregivers, including different presentations of disease, different commonly associated extra-intestinal manifestations or comorbid conditions, and different barriers to accessing care. In this supplementary issue, we review: Evolving trends in the epidemiology of IBD; updated estimates of indirect and direct costs (including out-of-pocket costs) associated with IBD; information specific to IBD in children, adolescents, and seniors; issues related to IBD pertaining to sex and gender; information specific to risks associated with COVID-19 and cancer related to IBD; an overview of current treatments for IBD; and evolving care models, including access to care.
Coward S, Benchimol EI, Kuenzig ME, Windsor JW, Bernstein CN, Bitton A, Jones JL, Lee K, Murthy SK, Targownik LE, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Im JHB, Davis T, Weinstein J, Goddard Q, Bennett J, Caplan L, Bergevin M , Yang XU, Mason K, Sanderson R, Brass C, Kaplan GG. The 2023 Impact of Inflammatory Bowel Disease in Canada: Epidemiology of IBD. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2): S9-S15.
IBD is recognized across the world, though Canada has among the highest burdens of IBD in the world. The Canadian Gastro-Intestinal Epidemiology Consortium (CanGIEC) led a six-province study that demonstrated the compounding prevalence of IBD in Canada from 400 per 100,000 in 2002 to 636 per 100,000 in 2014. The prevalence in 2023 is estimated at 825 per 100,000, meaning that over 320,000 people in Canada are living with IBD. Prevalence is forecasted to rise by 2.44% per year such that 1.1% of the population, 470,000 Canadians, will live with IBD by 2035. The overall incidence of IBD in 2023 is 30 per 100,000 person-years, indicating that over 11,000 Canadians will be newly diagnosed with IBD in 2023. Incidence is forecasted to rise by 0.58% per year up to 32.1 per 100,000 by 2035. The rising incidence of IBD is propelled by pediatric-onset IBD, which is rising by 1.23% per year from 15.6 per 100,000 in 2023 to 18.0 per 100,000 in 2035. In contrast, incidence rates among adults and seniors are relatively stable. Understanding the determinates of IBD has expanded through prospective cohort studies such as the CCC-GEM project. Consensus recommendations towards diet, lifestyle, behavioural and environmental modifications have been proposed by international organizations with the goal of optimizing disease control and ultimately preventing the development of IBD. Despite these efforts, Canadian healthcare systems will need to prepare for the rising number of people living with IBD.
Kuenzig ME, Im JHB, Coward S, Windsor JW, Kaplan GG, Murthy SK, Benchimol EI, Bernstein CN, Bitton A, Jones JL, Lee K, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Jones May T, Tabatabavakili S, Jogendran R, Weinstein J, Khan R, Hazan E, Browne M, Davis T, Goddard Q, Gorospe J, Latos K, Mason K, Kerr J, Balche N, Sklar A, Targownik, LE . The 2023 Impact of Inflammatory Bowel Disease in Canada: Indirect (Individual and Societal) and Direct Out-of-Pocket Costs. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2): S16-S22.
People living with IBD and their caregivers are faced with indirect and out-of-pocket costs that they would not otherwise experience. These costs impact one's ability to contribute to the economy to their fullest potential. The indirect costs of IBD in Canada are estimated to be at least $1.51 billion in 2023 and include costs associated with lost productivity resulting from a combination of missed work (absenteeism), decreased workplace productivity (presenteeism), unemployment, premature mortality, and caregiving costs. Unemployment is the largest contributor to indirect costs ($1.14 billion), followed by costs of absenteeism and presenteeism ($285 million). Caregiving costs for children with IBD are estimated to be nearly $58 million. Canadians with IBD also pay $536 million every year for care that is not covered by universal or supplemental private health insurance; this includes allied healthcare (e.g., care provided by psychologists), medication, and other supportive therapy. Combined, the indirect and out-of-pocket costs of IBD in Canada are estimated at more than $2 billion CAD in 2023. This is substantially higher than the estimate of $1.29 billion in Crohn's and Colitis Canada's 2018 Impact of IBD report with differences attributable to a combination of rising prevalence, inflation, and the addition of presenteeism and caregiving costs to the total indirect costs.
Kuenzig ME, Stephanie Coward , Laura E Targownik, Sanjay K Murthy, Eric I Benchimol EI, Windsor JW, Bernstein CN, Bitton A, Jones JL, Lee K, Peña-Sánchez JN, Rohatinsky N , Ghandeharian S, Im JHB, Jogendran R, Meka S , Weinstein J, Jones May T, Jogendran M, Tabatabavakili S, Hazan E , Hu M, Amankwah Osei J, Khan R, Wang G, Browne M, Davis T, Goddard Q, Gorospe J, Latos K, Mason K, Kerr J, Balche N, Sklar A, Kaplan GG. The 2023 Impact of Inflammatory Bowel Disease in Canada: Direct Health System and Medication Costs. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2): S23-S34.
Healthcare utilization among people living with IBD in Canada has shifted from inpatient management to outpatient management; fewer people with IBD are admitted to hospitals or undergo surgery, but outpatient visits have become more frequent. Although the frequency of emergency department visits among adults and seniors with IBD decreased, the frequency of emergency department visits among children with IBD increased. Additionally, there is variation in the utilization of IBD health services within and between provinces and across ethnocultural and sociodemographic groups. For example, First Nations individuals with IBD are more likely to be hospitalized than the general IBD population. South Asian children with Crohn's disease are hospitalized more often than their Caucasian peers at diagnosis, but not during follow-up. Immigrants to Canada who develop IBD have higher health services utilization, but a lower risk of surgery compared to individuals born in Canada. The total direct healthcare costs of IBD, including the cost of hospitalizations, emergency department visits, outpatient visits, endoscopy, cross-sectional imaging, and medications are rising rapidly. The direct health system and medication costs of IBD in Canada are estimated to be $3.33 billion in 2023, potentially ranging from $2.19 billion to $4.47 billion. This is an increase from an estimated $1.28 billion in 2018, likely due to sharp increases in the use of biologic therapy over the past two decades. In 2017, 50% of total direct healthcare costs can be attributed to biologic therapies; the proportion of total direct healthcare costs attributed to biologic therapies today is likely even greater.
El-Matary W, Carroll MW, Deslandres C, Griffiths AM, Keunzig ME, , Mack DR, Wine E, Weinstein J, Geist R, Davis T, Chan J, Khan R, Matthews P, Kaplan GG, Windsor JW, Bernstein CN, Bitton A, Coward S, Jones JL, Lee K, Murthy SK, Targownik LE, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Im JHB, Goddard Q, Gorospe J, Verdugo J, Morin SA, Morganstein T, Banning L, Benchimol EI. The 2023 Impact of Inflammatory Bowel Disease in Canada: Special Populations-Children and Adolescents with IBD. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2):S35-S44.
IBD in Canadian children and adolescents are among the highest in the world, and the incidence is rising most rapidly in children under five years of age. These young children may have either a typical form of IBD with multi-factorial etiology, or they may have a monogenic form. Despite the growing number of children in Canada living with this important chronic disease, there are few available medical therapies approved by Health Canada due to the omission of children from most clinical trials of newly developed biologics. As a result, off-label use of medications is common, and physicians have learned to use existing therapies more effectively. In addition, most Canadian children are treated in multidisciplinary, specialty clinics by physicians with extra training or experience in IBD, as well as specialist nurses, dietitians, mental health care providers and other allied health professionals. This specialized clinic approach has facilitated cutting edge research, led by Canadian clinicians and scientists, to understand the causes of IBD, the optimal use of therapies, and the best ways to treat children from a biopsychosocial perspective. Canadians are engaged in work to understand the monogenic causes of IBD; the interaction between genes, the environment, and the microbiome; and how to address the mental health concerns and medical needs of adolescents and young adults transitioning from pediatric to adult care.
Shaffer SR, Kuenzig ME, Windsor JW, Bitton A, Jones JL, Lee K, Murthy SK, Targownik LE Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Tandon P, St-Pierre J, Natt N, Davis T, Weinstein J, Im JHB, Benchimol EI, Kaplan GG, Goddard Q, Gorospe J, Bergevin M, Silver K, Bowles D , Stewart M, Pearlstein M, Dawson EH, Bernstein CN. The 2023 Impact of Inflammatory Bowel Disease in Canada: Special Populations-IBD in Seniors. Journal of Canadian Association of Gastroenterology 2023, Sep 5;6(Suppl 2):S45-S54.
Approximately one out of every 88 seniors has IBD, and this is expected to increase in the future. They are more likely to have left-sided disease in ulcerative colitis, and isolated colonic disease in Crohn's disease; perianal disease is less common. Other common diagnoses in the elderly must also be considered when they initially present to a healthcare provider. Treatment of the elderly is similar to younger persons with IBD, though considerations of the increased risk of infections and malignancy must be considered when using immune modulating drugs. Whether anti-TNF therapies increase the risk of infections is not definitive, though newer biologics, including vedolizumab and ustekinumab, are thought to be safer with lower risk of adverse events. Polypharmacy and frailty are other considerations in the elderly when choosing a treatment, as frailty is associated with worse outcomes. Costs for IBD-related hospitalizations are higher in the elderly compared with younger persons. When elderly persons with IBD are cared for by a gastroenterologist, their outcomes tend to be better. However, as elderly persons with IBD continue to age, they may not have access to the same care as younger people with IBD due to deficiencies in their ability to use or access technology.
Targownik LE, Bollegala N, Huang VH, Windsor JW, Kuenzig ME, Benchimol EI, Kaplan GG, Murthy SK, Bitton A, Bernstein CN, Jones JL, Lee K, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Davis T, Weinstein J, Im JHB, Jannati N, Khan R, Matthews P, Jones May T, Jogendran R, Hazan E, Browne M, Meka S, Vukovic S, Jogendran M, Hu M, Amankwah Osei J, Wang GY, Akhtar Sheekha T, Dahlwi G, Goddard Q, Gorospe J, Nisbett C, Gertsman S, Sousa J, Morganstein T, Stocks T, Weber A, Seow CH. The 2023 Impact of Inflammatory Bowel Disease in Canada: The Influence of Sex and Gender on Canadians Living With Inflammatory Bowel Disease. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2):S55-S63.
Sex (the physical and physiologic effects resulting from having specific combinations of sex chromosomes) and gender (sex-associated behaviours, expectations, identities, and roles) significantly affect the course of IBD and the experience of living with IBD. Sex-influenced physiologic states, like puberty, the menstrual cycle, pregnancy, and andropause/menopause may also impact and be impacted by IBD. While neither Crohn's disease nor ulcerative colitis is commonly considered sex-determined illnesses, the relative incidence of Crohn's disease and ulcerative colitis between males and females varies over the life cycle. In terms of gender, women tend to use healthcare resources at slightly higher rates than men and are more likely to have fragmented care. Women are more commonly prescribed opioid medications and are less likely than men to undergo colectomy. Women tend to report lower quality of life and have higher indirect costs due to higher rates of disability. Women are also more likely to take on caregiver roles for children with IBD. Women with IBD are more commonly burdened with adverse mental health concerns and having poor mental health has a more profound impact on women than men. Pregnant people with active IBD have higher rates of adverse outcomes in pregnancy, made worse in regions with poor access to IBD specialist care. The majority of individuals with IBD in Canada do not have access to a pregnancy-in-IBD specialist; access to this type of care has been shown to allay fears and increase knowledge among pregnant people with IBD.
Graff LA, Geist R, Kuenzig ME, Benchimol EI, Kaplan GG, Windsor JW, Bitton A, Coward S, Jones JL, Lee K, Murthy SK, Pena-Sanchez JN, Targownik LE, Jannati N, Jones May T, Akhtar Sheekha T, Davis T, Weinstein J, Dahlwi G, Im JHB, Amankwah Osei J, Rohitansky N, Ghandeharian S, Goddard Q, Gorsope J, Gertsman S, Louis M, Wagner R, Brass C, Sanderson R, Bernstein CN. The 2023 Impact of Inflammatory Bowel Disease in Canada: Mental Health and Inflammatory Bowel Disease. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2):S64-S75.
Psychiatric disorders are 1.5 to 2 times more prevalent in persons with IBD than in the general population, with pooled prevalence estimates of 21% for clinical anxiety and 15% for depression. Rates are even higher when considering mental health symptoms, as nearly one-third of persons with IBD experience elevated anxiety symptoms and one-quarter experience depression symptoms. Rates of these symptoms were much higher during periods of disease activity, more common in women than men, and more common in Crohn's disease than ulcerative colitis. There is robust evidence of the detrimental effects of comorbid depression and anxiety on the subsequent course of IBD based on longitudinal studies tracking outcomes over time. However, psychiatric disorders and IBD have bidirectional effects, with each affecting risk of the other. Elevated mental health concerns have been consistently associated with greater healthcare utilization and costs related to IBD. There is some signal that low resilience in adolescence could be a risk factor for developing IBD and that enhancing resilience may improve mental health and intestinal disease outcomes in IBD. Psychological therapies used to treat anxiety and depression occurring in the context of IBD have been shown to significantly improve the quality of life for persons with IBD and reduce anxiety and depression. There is less evidence in regard to the impact of psychotropic medications on mental health or disease outcomes in persons with IBD. There is consensus, however, that mental health must be addressed as part of comprehensive IBD care for children and adults.
Kaplan GG, Kuenzig ME, Windsor JW, Bernstein CN, Bitton A, Coward S, Jones JL,Lee K, Murthy SK, Targownik LE, Peña-Sánchez JN, Ghandeharian S, Rohatinsky N, Weinstein J, Jones May T, Browne M, Jannati N, Tabatabavakili S, Im JHB, Meka S, Vukovic S, Davis T, Goddard Q, Gorospe J, Stocks T, Caplan L, Kanaan N, Stuart D, Ramsay T, Robinson KJ, Charron-Bishop D, Benchimol EI. The 2023 Impact of Inflammatory Bowel Disease in Canada: COVID-19 and IBD. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2):S76-S82.
The COVID-19 pandemic had a monumental impact on the IBD community. At the beginning of the pandemic, knowledge on the effect of SARS-CoV-2 on IBD was lacking, especially in those with medication-suppressed immune systems. Throughout the pandemic, scientific literature exponentially expanded, resulting in clinical guidance and vaccine recommendations for individuals with IBD. Crohn's and Colitis Canada established the COVID-19 and IBD Taskforce to process and communicate rapidly transforming knowledge into guidance for individuals with IBD and their caregivers, healthcare providers, and policy makers. Recommendations at the onset of the pandemic were based on conjecture from experience of prior viruses, with a precautionary principle in mind. We now know that the risk of acquiring COVID-19 in those with IBD is the same as the general population. As with healthy populations, advanced age and comorbidities increase the risk for severe COVID-19. Individuals with IBD who are actively flaring and/or who require high doses of prednisone are susceptible to severe COVID-19 outcomes. Consequently, sustaining maintenance therapies (e.g., biologics) is recommended. A three-dose mRNA COVID-19 vaccine regimen in those with IBD produces a robust antibody response with a similar adverse event profile as the general population. Breakthrough infections following vaccine have been observed, particularly as the virus continues to evolve, which supports receiving a bivalent vaccine booster. Limited data exist on the impact of IBD and its therapies on long-term outcomes following COVID-19. Ongoing research is necessary to address new concerns manifesting in those with IBD throughout the evolving pandemic.
Murthy SK , Kuenzig ME, Windsor JW, Matthews P, Tandon P , Bernstein CN, Bitton A, Coward S, Jones JL, Kaplan GG, Lee K, Targownik LE, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Meka S, Chis RS, Gupta S, Cheah E, Davis T, Weinstein J, Im JHB , Goddard Q, Gorospe J, Loschiavo J, McQuaid K, D'Addario J , Silver K, Robyn Oppenheim R, Singh H. The 2023 Impact of Inflammatory Bowel Disease in Canada: Cancer and IBD. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2):S83-S96.
Cancer is a major cause of morbidity and mortality among people with inflammatory IBD. Intestinal cancers may arise as a complication of IBD itself, while extra-intestinal cancers may arise due to some of the immunosuppressive therapies used to treat IBD. Colorectal cancer and small bowel cancer risks remain elevated among persons with IBD as compared to age-and sex-matched members of the general population, and the lifetime risk of these cancers is strongly correlated to cumulative intestinal inflammatory burden. However, the cumulative risk of cancer, even among those with IBD is still low. Some studies suggest that IBD-related colorectal cancer incidence has declined over the years, possibly owing to improved treatment standards and improved detection and management of early neoplastic lesions. Across studies of extra-intestinal cancers, there are generally higher incidences of melanoma, hepatobiliary cancer, and lung cancer and no higher incidences of breast cancer or prostate cancer, with equivocal risk of cervical cancer, among persons with IBD. While the relative risks of some extra-intestinal cancers are increased with treatment, the absolute risks of these cancers remain low and the decision to forego treatment in light of these risks should be carefully weighed against the increased risks of intestinal cancers and other disease-related complications with undertreated inflammatory disease. Quality improvement efforts should focus on optimized surveillance of cancers for which surveillance strategies exist (colorectal cancer, hepatobiliary cancer, cervical cancers, and skin cancers) and the development of cost-effective surveillance strategies for less common cancers associated with IBD.
Murthy SK, Weizman AV, Kuenzig ME, Windsor JW, Kaplan GG Benchimol EI, Bernstein CN, Bitton A, Coward S, Jones JL, Lee K, Peña-Sánchez JN, Rohatinsky N, Ghandeharian S, Sabrie N, Gupta S, Brar G, Khan R, Im JHB, Davis T, Weinstein J, St-Pierre J, Chis R, Meka S, Cheah E, Goddard Q, Gorospe J, Kerr J, Beaudion KD, Patel A, Russo S, Blyth J, Blyth S, Charron-Bishop D, Targownik LE. The 2023 Impact of Inflammatory Bowel Disease in Canada: Treatment Landscape. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2):S97-S110.
The therapeutic landscape for IBD has changed considerably over the past two decades, owing to the development and widespread penetration of targeted therapies, including biologics and small molecules. While some conventional treatments continue to have an important role in the management of IBD, treatment of IBD is increasingly moving towards targeted therapies given their greater efficacy and safety in comparison to conventional agents. Early introduction of these therapies-particularly in persons with Crohn's disease-combining targeted therapies with traditional anti-metabolite immunomodulators and targeting objective markers of disease activity (in addition to symptoms), have been shown to improve health outcomes and will be increasingly adopted over time. The substantially increased costs associated with targeted therapies has led to a ballooning of healthcare expenditure to treat IBD over the past 15 years. The introduction of less expensive biosimilar anti-tumor necrosis factor therapies may bend this cost curve downwards, potentially allowing for more widespread access to these medications. Newer therapies targeting different inflammatory pathways and complementary and alternative therapies (including novel diets) will continue to shape the IBD treatment landscape. More precise use of a growing number of targeted therapies in the right individuals at the right time will help minimize the development of expensive and disabling complications, which has the potential to further reduce costs and improve outcomes.
Mathias H, Rohatinsky N, Murthy SK, Novak N, Kuenzig ME, Nguyen GC, Fowler S, Benchimol EI, Coward S, Kaplan GG, Windsor JW, Bernstein CN, Targownik LE, Peña-Sánchez JN, Lee K, Ghandeharian S, Jannati N, Weinstein J, Khan R, Im JHB, Matthews P, Davis T, Goddard Q, Gorospe J, Latos K, Louis M, Balche N, Dobranowski P, Patel A, Porter LJ, Bitton A, Jones JL. The 2023 Impact of Inflammatory Bowel Disease in Canada: Access to and Models of Care. Journal of Canadian Association of Gastroenterology 2023 Sep 5;6(Suppl 2): S111-S121.
Rising compounding prevalence of IBD and pandemic-exacerbated health system resource limitations have resulted in significant variability in access to high-quality, evidence-based, person-centered specialty care for Canadians living with IBD. Individuals with IBD have identified long wait times, gaps in biopsychosocial care, treatment and travel expenses, and geographic and provider variation in IBD specialty care and knowledge as some of the key barriers to access. Care delivered within integrated models of care has shown promise related to impact on disease-related outcomes and quality of life. However, access to these models is limited within the Canadian healthcare systems and much remains to be learned about the most appropriate integrated models of care team composition and roles. Although eHealth technologies have been leveraged to overcome some access challenges since COVID-19, more research is needed to understand how best to integrate eHealth modalities (i.e., video or telephone visits) into routine IBD care. Many individuals with IBD are satisfied with these eHealth modalities. However, not all disease assessment and monitoring can be achieved through virtual modalities. The need for access to person-centered, objective disease monitoring strategies, inclusive of point of care intestinal ultrasound, is more pressing than ever given pandemic-exacerbated restrictions in access to endoscopy and cross-sectional imaging. Supporting learning healthcare systems for IBD and research relating to the strategic use of innovative and integrative implementation strategies for evidence-based IBD care interventions are greatly needed. Data derived from this research will be essential to appropriately allocating scarce resources aimed at improving person-centered access to cost-effective IBD care.