Variation in the Care of Children with Inflammatory Bowel Disease Within and Across Canadian Provinces: A Multi-Province Population-Based Cohort Study

Abstract

Purpose

The incidence of childhood-onset inflammatory bowel disease (IBD) is rising. We described variation in health services utilization and need for surgery among children with IBD between six and 60 months following IBD diagnosis across Canadian pediatric centers and evaluated the associations between care provided at diagnosis at each center and the variation in these outcomes.

Patients and Methods

Using population-based deterministically-linked health administrative data from four Canadian provinces (Alberta, Manitoba, Nova Scotia, Ontario) we identified children diagnosed with IBD <16 years of age using validated algorithms. Children were assigned to a pediatric center of care using a hierarchical approach based on where they received their initial care. Outcomes included IBD-related hospitalizations, emergency department (ED) visits, and IBD-related abdominal surgery occurring between 6 and sixty months after diagnosis. Mixed-effects meta-analysis was used to pool results and examine the association between center-level care provision and outcomes.

Results

We identified 3784 incident cases of pediatric IBD, of whom 2937 (77.6%) were treated at pediatric centers. Almost a third (31.4%) of children had ≥1 IBD-related hospitalization and there were 0.66 hospitalizations per person during follow-up. More than half (55.8%) of children had ≥1 ED visit and there were 1.64 ED visits per person. Between-center heterogeneity was high for both outcomes; centers where more children visited the ED at diagnosis had more IBD-related hospitalizations and more ED visits during follow-up. Between-center heterogeneity was high for intestinal resection in Crohn’s disease but not colectomy in ulcerative colitis.

Conclusion

There is variation in health services utilization among children with IBD and risk of undergoing intestinal resection in those with Crohn’s disease, but not colectomy among children with ulcerative colitis, across Canadian pediatric tertiary-care centers. Improvements in clinical care pathways are needed to ensure all children have equitable and timely access to high quality care.

Plain Language Summary

Inflammatory bowel disease (IBD) is a chronic health condition of the gastrointestinal system, which is becoming more common in children. They require lifelong treatment and receiving high quality care is important for preventing complications. We determined if outcomes of children with IBD was different across Canada. We also tested if differences in care at diagnosis was related to outcomes. More than three-quarters of children with IBD were treated at pediatric hospitals. Children treated at some hospitals were more likely to be hospitalized and visit the emergency room when compared to children treated at other hospitals. Children with Crohn’s disease (one type of IBD) were more likely to have surgery at some hospitals when compared to children treated at other hospitals. We should improve care to make sure children living with IBD have timely access to high quality specialist care.

Keywords:

• Crohn’s disease
• ulcerative colitis
• health administrative data
• variation in care
• health services utilization
• surgery

Abbreviations

AB, Alberta; CD, Crohn’s disease; CI, confidence interval; CIHI, Canadian Institute for Health Information; ED, emergency department; HR, hazard ratio; IBD, inflammatory bowel disease; ICC, intraclass correlation coefficient; ICD, International Classification of Diseases; MB, Manitoba; MHR, median hazard ratio; MRR, median rate ratio; NS, Nova Scotia; ON, Ontario; OR, odds ratio; RR, rate ratio; SD, standard deviation; SE, standard error.

Data Sharing Statement

This is a multiprovince study whereby province-specific datasets are provided to investigators in each province and analyzed locally. Province-specific data availability statements are provided below:

• Alberta: To comply with Alberta’s Health Information Act and in order to minimize the possibility of unintentionally sharing information that can be used to re-identify private information, the dataset cannot be made publicly available. The data from the present study are held securely in de-identified form on a secure server at the University of Calgary and was provided by the Alberta Strategy for Patient Oriented Research Support Unit (AbSPORU). Legal data-sharing agreements between the researchers, AbSPORU, and the data providers (eg, health care organizations and government) prohibit researchers from making the data set publicly available. The underlying the analytic code is available from the authors upon request.

• Manitoba: This study is based in part on de-identified data provided by Manitoba Health and the data used in these analyses are owned by the government of Manitoba. We were given permission to use the data to conduct the analysis. However, we do not have permission to share the data. Researchers interested in replicating results, can apply to the ministry of health to access the data through the Provincial Health Research Privacy Committee. Instructions can be found at https://www.rithim.ca/phrpc-overview. The interpretation and conclusions contained herein are those of the authors and do not necessarily represent the views of the Government of Manitoba.

• Nova Scotia: This study is based in part on de-identified data provided by Health Data Nova Scotia. The interpretation and conclusions contained herein are those of the researchers and do not necessarily represent the views of the Government of Nova Scotia. Neither the Government of Nova Scotia nor Health Data Nova Scotia expressed any opinion in relation to this study.

• Ontario: The dataset from the Ontario portion of this study is held securely in coded form at ICES. While legal data sharing agreements between ICES and data providers (eg healthcare organizations and government) prohibit ICES from making the dataset publicly available, access may be granted to those who meet pre-specified criteria for confidential access, available at www.ices.on.ca/DAS (email: [email protected]). The full dataset creation plan and underlying analytic code are available from the authors upon request, understanding that the computer programs may rely upon coding templates or macros that are unique to ICES and are therefore either inaccessible or may require modification.

Acknowledgments

MEK was supported by a Post-Doctoral Fellowship Award from the Canadian Institutes of Health Research (CIHR), Canadian Association of Gastroenterology (CAG), and Crohn’s and Colitis Canada and a Mitacs Elevate Post-Doctoral Fellowship. DRM is supported in part through a University of Ottawa Faculty of Medicine Distinguished Clinical Research Chair in Pediatric Inflammatory Bowel Disease Award. TJBD is the Canadian Cancer Society Chair in Cancer Primary Prevention. EIB was supported by a New Investigator Award from the CIHR, CAG and Crohn’s and Colitis Canada and also by the Career Enhancement Program of the Canadian Child Health Clinician Scientist Program. EIB holds the Northbridge Financial Corporation Chair in Inflammatory Bowel Disease, a joint Hospital-University Chair between the University of Toronto, The Hospital for Sick Children, and the SickKids Foundation. The authors appreciate the contributions from the Canadian Children IBD Network (CIDsCaNN), a national collaborative funded by the C.H.I.L.D. Foundation. The authors also acknowledge the investigators of the Canadian Gastro-Intestinal Epidemiology Consortium (CanGIEC). The list of CanGIEC investigators can be seen here: https://cangiec.ca/about_us/.

This study was supported by the ICES, which is funded by an annual grant from the Ontario Ministry of Health (MOH) and the Ministry of Long-Term Care (MLTC). Parts of this material are based on data and information compiled and provided by the Ontario Ministry of Health and CIHI. The analyses, conclusions, opinions and statements expressed herein are solely those of the authors and do not reflect those of the funding or data sources; no endorsement is intended or should be inferred.

Portions of this paper were presented as an oral presentation at the Annual Canadian Association for Health Services and Polity Research (CAHPSR) Conference in 2019 and poster presentations at Canadian Digestive Diseases Week (CDDW) in 2020 and 2023. The abstract presented at the Annual CAHSPR Conference is available in the conference proceedings: https://cahspr.ca/wp-content/uploads/2020/11/Book-of-Abstracts-CAHSPR-2019.pdf). The abstracts presented at CDDW were published in the Journal of the Canadian Association of Gastroenterology (2020: https://academic.oup.com/jcag/article/3/Supplement_1/78/5760476; 2023: https://academic.oup.com/jcag/article/6/Supplement_1/27/7071207).

Author Contributions

All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.

Disclosure

Matthew Carroll has received speaker fees from AbbVie.

Gilaad Kaplan has received honoraria for speaking or consultancy from AbbVie, Amgen, Janssen, Pfizer, Sandoz, and Pendopharm. Dr. Kaplan received grants for research from Ferring and for educational activities from AbbVie, Bristol Myers Squibb, Ferring, Fresenius-Kabi, Janssen, Pfizer, Takeda. He shares ownership of a patent: TREATMENT OF INFLAMMATORY DISORDERS, AUTOIMMUNE DISEASE, AND PBC. UTI Limited Partnership, assignee. Patent WO2019046959A1. PCT/CA2018/051098. September 7, 2018.

Anthony Otley has been on advisory boards of AbbVie Canada, Janssen Canada and Amgen. He has received unrestricted educational grants from AbbVie Canada. His site is involved with clinical trials for AbbVie, Pfizer, Takeda, Eli Lily and BMS. He is co-owner of the copyright for PUCAI and the IMPACT questionnaire.

Harminder Singh has been on advisory boards or consulted for Pendopharm, Abbvie Canada, Amgen Canada, Organon Canada, Eli Lilly Canada, Roche Canada, Sandoz Canada, Takeda Canada, Bristol Myers Squibb, and Guardant Health Inc. and has received research funding for an investigator-initiated study from Pfizer.

Alain Bitton has participated in advisory boards with AbbVie, Janssen, Takeda, McKesson, BioJamp, Bristol Myers Squibb. He is on the speaker’s panel for Janssen, Takeda, Abbvie and has participated in educational activities supported by Viatris, Fresenius Kabi, and Amgen.

Anne Griffiths is past holder of the Northbridge Financial Corporation Chair in Inflammatory Bowel Disease, a joint Hospital-University Chair between the University of Toronto, The Hospital for Sick Children, and the SickKids Foundation. She has received research support from Abbvie Canada. She is co-owner of copyright for the Pediatric Ulcerative Colitis Activity Index (PUCAI) and for the TUMMY-UC. She has been an advisory board member or consultant for Abbvie, Amgen, BristolMyersSquibb, Janssen, Lilly, Merck, Pfizer, Takeda, and has received speaker fees from Abbvie, Janssen, Takeda.

David Mack is co-owner of Biotagenics Inc.

Kevan Jacobson has been on Advisory boards of Abbvie Canada, Janssen Canada, Amgen, Merck Canada, Mylan Pharmaceuticals, Viatris, and Mckesson Canada. He has been on the speaker’s bureau of Abbvie Canada and Janssen Canada. He has received investigator-initiated research support from Abbvie Canada and Janssen Canada. He has stock options for Engene.

Geoffrey Nguyen has served on advisory boards for Abbvie Canada and Takeda Canada.

Laura Targownik has received research funding from AbbVie Canada, Takeda Canada, Sandoz Canada, Amgen Canada, Gilead Canada, Roche Canada and Pfizer Canada, and has been on Advisory Boards for Janssen Canada, AbbVie Canada, Takeda Canada, Pfizer Canada, Merck Canada, Roche Canada, Sandoz Canada, Organon Canada, Fresesnius Kabi Canada, Eli Lilly Canada, and Amgen Canada.

Charles Bernstein is supported by the Bingham Chair in Gastroenterology. He has served on advisory Boards for AbbVie Canada, Amgen Canada, Bristol Myers Squibb Canada, Eli Lilly Canada, Ferring Canada, JAMP Pharmaceuticals, Pendopharm Canada, Janssen Canada, Sandoz Canada, Takeda Canada, and Pfizer Canada. He has educational grants from Abbvie Canada, Amgen Canada, Bristol Myers Squibb Canada, Eli Lilly Canada, Organon Canada, Pfizer Canada, Takeda Canada, and Janssen Canada. He is on the speaker’s panel for Abbvie Canada, Janssen Canada, Pfizer Canada, and Takeda Canada. He has received research funding from Abbvie Canada, Amgen Canada, Pfizer Canada, Sandoz Canada, and Takeda Canada.

Jennifer Jones has received honoraria for speaking and consulting for AbbVie, Janssen, Pfizer, Shire, and Takeda.

Sanjay Murthy has previously participated in advisory board meetings for AbbVie, Janssen, Takeda, Pfizer, Shire and Ferring and as a speaker at educational events sponsored by Janssen, AbbVie and Pfizer.

Eric Benchimol holds the Northbridge Financial Corporation Chair in Inflammatory Bowel Disease, a joint Hospital-University Chair between the University of Toronto, The Hospital for Sick Children, and the SickKids Foundation. He has acted as a consultant for the Dairy Farmers of Ontario and McKesson Canada for matters unrelated to medications used to treat inflammatory bowel disease. He has also acted as a consultant for the Canadian Agency for Drugs and Technology in Health.

The authors report no other conflicts of interest in this work.

Additional information

Funding

This work was supported by a Grant-in-Aid of Research from Crohn’s and Colitis Canada, a Foundation Grant from the Canadian Institutes of Health Research (grant number 201409FDN-333131-FDN-CECC-164898), and a Project Scheme Operating Grant from the Canadian Institutes of Health Research (grant number PJT-162393). The funders had no role in any of the study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.