Gil Kaplan, MD, MPH, FRCPC. Eric Benchimol, MD, PhD, FRCPC

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1 Gil Kaplan, MD, MPH, FRCPC Co-Chair, 2018 CCC Impact of IBD Report CIHR Embedded Clinician Research Chair University of Calgary Eric Benchimol, MD, PhD, FRCPC Co-Chair, 2018 CCC Impact of IBD Report Associate Professor of Pediatrics and Epidemiology University of Ottawa

2 2 The Impact of IBD in Canada 2018: Objectives 1. Create an up-to-date relevant overview on the burden of Crohn s and colitis in Canada 2. Raise awareness of IBD for the general public, patients, healthcare providers, administrators, and policy makers 3. Provide guidance to changes needed in the delivery of care and in the prioritization of research funding.

3 The Impact of IBD Report builds on existing high quality, scientific research update of the 2012 Report. IBD Impact Report About-Us/Resources- Publications/Impact-of- IBD-Report Kate Lee Epidemiology Literature Review Quality of Life Direct Costs Teleconferences Webinars Steering Committee Co-Chairs: Benchimol & Kaplan Working Groups Children with IBD IBD Research Landscape Drafting Sections Seniors with IBD Indirect Costs Iterative Review 3 Jane Cooke-Lauder Extra-Intestinal Disease Stakeholder Engagement JCAG Articles: academic.oup.com/ jcag/advance-articles 2018 IBD Impact Report LAUNCHED NOVEMBER 1 JCAG 9 Articles online Nov 2

4 4 Steering Committee Gastroenterologists (CanGIEC members): Gilaad Kaplan, MD, MPH, FRCPC, University of Calgary (Co-Chair) Eric Benchimol, MD, PhD, FRCPC, University of Ottawa (Co-Chair) Charles Bernstein, MD, FRCPC, University of Manitoba Sanjay Murthy, MD, MSc, FRCPC, University of Ottawa Geoffrey Nguyen, MD, PhD, FRCPC, University of Toronto Alain Bitton, MD, FRCPC, McGill University Crohn s and Colitis Canada: Kate Lee, PhD, MBA, Vice President of Research and Patient Programs Jane Cooke-Lauder, MBA, DM, CMC, Consultant, Bataleur Enterprises Inc. Mina Mawani, President & CEO Research staff: Shabnaz Siddiq, MSc, Project Coordinator Joseph Windsor, PhD, Editor Fox Underwood, MSc, Editor

5 5 Working Committees Section 1: Epidemiology Eric Benchimol, University of Ottawa Charles Bernstein, University of Manitoba Alain Bitton, McGill University Stephanie Coward, University of Calgary Gilaad Kaplan, University of Calgary Section 2: Direct Costs & Health Services Utilization Eric Benchimol, University of Ottawa Ellen Kuenzig, University of Ottawa Lawrence Lee, McGill University Sanjay Murthy, University of Ottawa Geoffrey Nguyen, University of Toronto Harminder Singh, University of Manitoba Laura Targownik, University of Manitoba Section 3: Indirect Costs of IBD Care Wael El-Matary, University of Manitoba Ellen Kuenzig, University of Ottawa Lawrence Lee, McGill University Sanjay Murthy, University of Ottawa Adam Weizman, University of Toronto Section 4: Quality of Life of Patients with IBD Jennifer Jones, Dalhousie University Geoffrey Nguyen, University of Toronto Anthony Otley, Dalhousie University Section 5: Section 6: Section 7: Special Populations: Children with IBD Eric Benchimol, University of Ottawa Matthew Carroll, University of Alberta Anne Griffiths, University of Toronto Ellen Kuenzig, University of Ottawa David Mack, University of Ottawa Anthony Otley, Dalhousie University Special Populations: IBD in Seniors Geoffrey Nguyen, University of Toronto Harminder Singh, University of Manitoba Laura Targownik, University of Manitoba Extra-Intestinal Disease Charles Bernstein, University of Manitoba Gilaad Kaplan, University of Calgary Section 8: IBD Research Landscape in Canada Keeley Rose, CIHR Institute of Nutrition, Metabolism and Diabetes Philip Sherman, CIHR Institute of Nutrition, Metabolism and Diabetes Jane Cooke-Lauder, Bataleur Enterprises Eric Benchimol, University of Ottawa Gilaad Kaplan, University of Calgary Kate Lee, Crohn s and Colitis Canada

6 6 Epidemiology, Seniors with IBD, and Complications of IBD

7 Prevalence of IBD is 0.7% in 2018: 270,000 people live with IBD in Canada ,754 33,165 32,349 7,332 8, ,776 56,813 1,106 5,532 11,610 Coward et al., JCAG 2018;1(Supp 2):

8 Predictive modeling estimates that 400,000 (1%) of Canadians will have IBD in the next decade. 3% per year 270,000 in 2018 (0.7%) 400,000 In 2030 (1.0%) Coward et al., JCAG 2018;1(Supp 2):

9 The IBD Clinic will transform over the next decade as gastroenterologists care for an older population with comorbidities of advanced aging and live with the complications of IBD. One out of every 160 individuals over the age of 65 in Canada is living with IBD The rising rate in seniors is the result of new diagnoses made in this population as well as the advancing age of previously diagnosed patients who carry the disease with them for the rest of their lives

10 10 GAPS IN KNOWLEDGE Explore the changing demographics of IBD in Canada. Evaluate healthcare infrastructure and workforce planning to meet the rising burden of IBD Develop multidisciplinary models of care for an aging IBD population with complications and comorbidities

11 11 CHILDREN WITH IBD AND THEIR FAMILIES

12 12 INCIDENCE AND PREVALENCE 3,000 children <16 years old living with IBD new diagnoses every year Prevalence increased by 50% between PREVALENCE (PER 100,000 CHILDREN) Benchimol et al., Am J Gastroenterol 2017;112:

13 13 INCIDENCE AND PREVALENCE Projection of prevalence in <18 years 2008: 68 per 100,000 4,730 children/youth in Canada 2018: 101 per 100,000 7,254 children/youth 2030: 172 per 100,000 13,685 children/youth

14 14 GAPS IN KNOWLEDGE Why rising rates in the youngest children? Optimizing health care for children Lack of clinical trials Psychosocial & family impact

15 15 THE COST OF CARING FOR PATIENTS WITH IBD

16 16 DIRECT COSTS: Health care expenditures for medically necessary services and treatments, paid by public and private payers. Based on Canadian research 4 publications, 3 provinces (Alberta, Manitoba, Québec) INDIRECT COSTS: Costs borne by individuals and society not covered by third party payers Very limited Canadian data extrapolated from other countries Based on estimated prevalence of 270,000 people with IBD in 2018 COSTING METHODOLOGY

17 17 DIRECT COSTS: IBD Costs the Health System $1.28 billion per year ($4,731 per person) Dominated by prescription drugs Biosimilars may represent significant cost savings Decreasing hospitalization and surgery rates Care by gastroenterologist resulted in lower hospitalization and surgery risk Rural patients less likely to see GI

18 18 INDIRECT COST: IBD Costs the Canadian Economy $1.29 billion per year ($4,781 per person) Short- and long-term productivity losses: $154.7 million Premature retirement: $629 million Premature death: $33.6 million Out-of-pocket: $540.8 million

19 19 COSTS GAPS IN KNOWLEDGE Sparse data (especially Canadian) Cost-utility models and budget impact analyses Balance increased direct costs with reduction in indirect costs Unknown indirect costs: Professional development Caregiver burden Costs in Canadian children and families

20 20 RESEARCH LANDSCAPE

21 21 RESEARCH FUNDING IN CANADA NAPHRO Crohn s and Colitis Canada CIHR

22 22 RESEARCH FUNDING IN CANADA Disease Funding IBD MS Type 1 Diabetes Parkinson s $115.1 million $94.5 million $98.2 million $61.9 million

23 23 RESEARCH FUNDING IN CANADA Disease Funding Prevalence IBD $115.1 million 270,000 MS $94.5 million 117,976 Type 1 Diabetes $98.2 million 300,000 Parkinson s $61.9 million 100,000

24 24 RESEARCH FUNDING IN CANADA Disease Funding Prevalence Funding per patient IBD $115.1 million 270,000 $426 MS $94.5 million 117,976 $801 Type 1 Diabetes $98.2 million 300,000 $327 Parkinson s $61.9 million 100,000 $619

25 25 RESEARCH FUNDING IN CANADA Nation Total Papers Proportion of Country s Publications in Top 10% Impact Papers Average of Relative Citations (ARC) Netherlands % 2.37 Canada % 2.19 France % 2.14 United Kingdom 1,050 25% 2.14 United States 3,865 21% 1.78 World 12,750 14% 1.27

26 26 SUMMARY & CONCLUSIONS

27 27 SUMMARY & CONCLUSIONS Canada has amongst the highest rates of IBD in the world, will affect 1% of the population by 2030 The CCC Impact of IBD Report is a tool to inform the CCC, scientists, the public and policy-makers Insight into disease burden Overview of the current literature Recommendations

28 28 FUTURE DIRECTIONS Report will be used to create educational and advocacy documents Help guide Crohn s and Colitis Canada s research priorities in health services and population-health research Living document

29 29 THANK YOU! IBD Impact Report About-Us/Resources- Publications/Impact-of- IBD-Report JCAG Articles: academic.oup.com/ jcag/advance-articles

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