Arthritis Care for Indigenous Populations

 

 

Scientific Study Title:

Arthritis Care for Indigenous Populations

 

 

Study Start Date

July 2015  

 

 

End Date

March 2024

 

Why Did We Do This Research?

In Indigenous populations in Canada, severe inflammatory arthritis (including, but not limited to, rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis) stands out as the most common chronic condition. We did this research to:

  1. Describe the impact of inflammatory arthritis on mortality, health services use, and societal cost in the Indigenous populations of Canada
  2. Determine Indigenous patient preferences for inflammatory arthritis care and treatment
  3. Develop tools to assist Indigenous patients and their health care providers to agree on treatment choices, expectations and values when discussing proven treatment options for inflammatory arthritis therapy.

 

What Did We Do?

We conducted a series of research studies to address the research objectives, using many research methods. Specifically, we:

  • Led qualitative research such as interviews, focus groups, and narrative-based approaches to explore Indigenous patients’ perspectives, preferences, and experiences regarding healthcare, treatment options, and healthcare models.
  • Employed quantitative research methods to measure the effectiveness, feasibility, and acceptability of healthcare interventions and models of care.
  • Conducted mixed-methods research, combining qualitative and quantitative approaches to provide a comprehensive understanding of healthcare experiences and outcomes among Indigenous populations.
  • Led literature reviews (e.g., scoping and systematic reviews) to synthesize existing evidence, identify gaps in knowledge, and inform healthcare policy and practice.
  • Focused on the development and adaptation of tools, such as patient decision aids and patient complexity assessment tools, to support shared decision-making, enhance patient-provider communication, and address the unique needs of Indigenous patients in healthcare settings.

 

What Did We Find?

This research highlighted significant disparities in the occurrence, burden, and management of inflammatory arthritis among Indigenous populations in Canada. Indigenous communities face higher rates of inflammatory arthritis, leading to increased morbidity, disability, and reduced quality of life compared to non-Indigenous populations. Limited access to healthcare services, including rheumatology care, was found among our research studies, contributing to delayed diagnosis and less than optimal management of inflammatory arthritis among Indigenous individuals. These disparities were found to result in higher healthcare resource utilization, including hospitalizations and emergency department visits, and inflicted large societal costs related to productivity loss and disability support services.

Indigenous patients expressed a preference for holistic approaches to inflammatory arthritis care that incorporate both traditional healing practices and conventional pharmacological treatments. They emphasized the importance of culturally sensitive care, patient-provider communication, and shared decision-making in treatment decisions. Indigenous patients revealed their personal values in having access to comprehensive care that addresses physical, mental, emotional, and spiritual aspects of health.

We also conducted research on developing tools, such as patient decision aids, to facilitate shared decision-making between Indigenous patients and healthcare providers regarding inflammatory arthritis therapy. These tools aim to assist Indigenous patients in understanding their treatment options, weighing risks and benefits of these treatments, and aligning treatment choices with their preferences, expectations, and values.

Overall, the research findings underscore the importance of addressing health disparities, promoting culturally sensitive care, and enhancing patient-provider communication and shared decision-making to improve IA outcomes among Indigenous populations in Canada.

 

Who Was Involved?

Indigenous community partners in this research included the Alberta First Nations Information Governance Centre, the Elbow River Healing Lodge, and the Siksika Nation.

 

Research Team

Principal Investigator:

Cheryl Barnabe, MD, MSc, FRCPC, Senior Scientist, Rheumatology, Arthritis Research Canada (University of Calgary)

 

Co-Investigators:

Sasha Bernatsky, MD, FRCPC, PhD, Assistant Professor, Department of Medicine, Research Institute of the McGill University Health Centre

Vivian Bykerk, MD, FRCPC, Professor & Scientific Programme Leader, Associate Professor of Medicine, Weill Cornell Medical

Lynden Crowshoe, MD, Associate Professor of Medicine, (University of Calgary)

Glen Hazlewood, MD, PhD, FRCPC, Research Scientist, Rheumatology, Arthritis Research Canada (University of Calgary)

Brenda Hemmelgarn, PhD, Professor of Medicine and Community Health Sciences, (University of Calgary)

Janet Jull, OT, PhD, (University of Ottawa)

Diane Lacaille, MDCM, MHSc, FRCPC, Scientific Director, Arthritis Research Canada (University of British Columbia)

Lisa Lix, Professor of Medicine, (University of Manitoba)

Walter Maksymowych, MD, Professor of Medicine, (University of Alberta)

Deborah A. Marshall, PhD, Senior Scientist, Health Services Research and Health Economics, Arthritis Research Canada (University of Calgary)

Janet Smylie, MD, FCFP, MPHAssociate Professor, University of Toronto, Dalla Lana School of Public Health, Director, Well Living House, St. Michael’s Hospital (Toronto)

Wilfreda Thurston, PhD, Professor Department of Community Health Sciences, (University of Calgary)

 

Who Funded the Research?

The Canadian Institutes for Health Research

 

Related Publications:

  1. Hurd K, Barnabe C. Systematic Review of Rheumatic Disease Phenotypes and Outcomes in the Indigenous Populations of Canada, the United States, Australia and New Zealand. Rheumatology International 2016; in press.
  2. Barnabe C, Lockerbie S, Erasmus E, Crowshoe L. Outcomes of Facilitated Access to an Integrated Arthritis Model of Care for an Urban Indigenous Population. Canadian Family Physician 2016; in press.
  3. McDougall C, Hurd K, Barnabe C. Systematic Review of Rheumatic Disease Epidemiology in the Indigenous Populations of Canada, the United States, Australia and New Zealand. Seminars in Arthritis and Rheumatism 2016, Nov 1. Pii:S0049-0172(16)30168-8. Doi: 10.1016/j.semarthrit.2016.10.010 [epub ahead of print].
  4. Loyola-Sanchez A, Hurd K, Barnabe C. Healthcare Utilization for Arthritis by Indigenous Populations of Australia, Canada, New Zealand and the United States: A Systematic Review. Seminars in Arthritis and Rheumatism 2016, in press.
  5. Barnabe C, Healy B, Portolesi A, Kaplan GG, Hemmelgarn BR, Weaselhead C. Claims for Disease-Modifying Therapy by Alberta First Nations. BMC Health Services Research 2016 Aug 24;16(1):430. Doi: 10.1186/s12913-016-1685-y.
  6. Barnabe C, Jones CA, Bernatsky S, Peschken CA, Voaklander D, Homik J, Crowshoe LF, Esdaile JE, El-Gabalawy H, Hemmelgarn B. Inflammatory Arthritis Prevalence and Health Services Use in the First Nations Population of Alberta, Canada. Arthritis Care and Research 2016 Jun 22. Doi: 10.1002/acr.22959.