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Understanding Care of People with Rheumatoid Arthritis in the Community
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Scientific Study Title:
Rheumatoid Arthritis in Canadian Primary Care Settings: Epidemiology, Management of Care and Patient Experience
Start Date:
  • January 1, 2021
End Date:
  • December 31, 2023
Research Category
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Allyson Jones
Affiliate Scientist, Rehabilitation Sciences, PT, PhD
Claire Barber-Website Headshot-400x400
Claire Barber
Research Scientist, Rheumatology, MD, PhD, FRCPC
Cheryl Barnabe, Research Team Member, Arthritis Research Canada
Cheryl Barnabe
Senior Scientist, Rheumatology, MD, MSc, FRCPC

Why did we do this research?

Reason For Research

Family doctors play a key role in the management of rheumatoid arthritis and are often the patient’s first contact with the healthcare system. Currently, the management of rheumatoid arthritis by family doctors across Canada is not well understood.

What did we do?

Execution of Research

We looked at how family doctors manage rheumatoid arthritis in its early stages and explored patients’ experiences with rheumatoid arthritis as they navigated through the healthcare system. We used data from a Canadian national surveillance network that collects information from family doctors in communities to determine the number of people who have rheumatoid arthritis and the type of treatment they receive both before and after a diagnosis. Our goal was to better understand both medical care and personal challenges to improve support for people with rheumatoid arthritis. We also organized focus groups with primary healthcare providers in Calgary and Edmonton to learn about their experiences with patients, adding to our existing data and patient interviews.

What did we find?

Using the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) we developed an algorithm to identify people with rheumatoid arthritis so that other investigators can also use this data platform. We also looked at CPCSSN data from southern Alberta and interviewed people with rheumatoid arthritis and family physicians about the use of prednisone and found that disparities and guideline implementation challenges persist. Despite its value as bridging therapy, our data reveals prolonged use beyond initial symptom management, particularly among men. Family doctors face difficulties balancing immediate symptom relief with early DMARD initiation amid extended specialist wait times.

Lastly, we revised the Candidacy Framework, a conceptual framework used in health services research to explain how people become eligible for, seek, access, and use healthcare, and how this process is negotiated between individuals and health systems. The revised version recognizes that a person is shaped by multiple overlapping identities, that are continually formed through relationships and systems. The Candidacy 2.0 framework was used to explore how individuals interpret and respond to rheumatoid arthritis symptoms, to understand early symptom recognition and help-seeking behaviour. The findings of this research can help us reduce diagnostic delays and improve early treatment access.

The Research Team

Principal Investigator: 

Allyson Jones, PT, PhD, Affiliate Scientist, Rehabilitation Sciences, Arthritis Research Canada (University of Alberta)

Co-Principal Investigator: 

Neil Drummond, Professor and University Research Chair in Primary Care, Department of Family Medicine, (University of Alberta)

Co-Investigators: 

Claire Barber, MD, PhD, FRCPC, Research Scientist, Rheumatology, Arthritis Research Canada (University of Calgary)

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

Scott Garrison, Associate Professor, Department of Family Medicine, Faculty of Medicine and Dentistry, (University of Alberta)

Doug Klein, Professor, Department of Family Medicine, Faculty of Medicine and Dentistry, (University of Alberta)

Cliff Lindeman, SPOR Primary & Integrated, Department of Family Medicine, Faculty of Medicine and Dentistry, (University of Alberta)

Jessica Widdifield, Assistant Professor, Institute of Health Policy, Management & Evaluation, (University of Toronto)

Tyler Williamson, Associate Professor of Biostatistics, Department of Community Health Sciences, Associate Director, Centre for Health Informatics, Cumming School of Medicine, (University of Calgary)

Who Funded This Research?

Arthritis Society Canada

How Can People Get Involved?

Involvement

An interdisciplinary team of 14 members, including patient partners, clinicians and researchers, were actively involved in leading this study. An advisory committee of people with rheumatoid arthritis provided significant guidance for the projects.

Related Publications

  • Pham, A. N. Q., Barber, C. E. H., Drummond, N., Jasper, L., Klein, D., Lindeman, C., Widdifield, J., Williamson, T., & Jones, C. A. (2024). Development and validation of a rheumatoid arthritis case definition: a machine learning approach using data from primary care electronic medical records. BMC Medical Informatics and Decision Making, 24(1), 360. https://doi.org/10.1186/s12911-024-02776-w
  • Koehn, S., Jones, C. A., Barber, C., Jasper, L., Pham, A., Lindeman, C., & Drummond, N. (2024). Candidacy 2.0 (CC) – an enhanced theory of access to healthcare for chronic conditions: lessons from a critical interpretive synthesis on access to rheumatoid arthritis care. BMC Health Services Research, 24(1), 986. https://doi.org/10.1186/s12913-024-11438-6
  • Koehn, S., Jones, C. A., Pham, A., Barber, C. E. H., Widdifield, J., Jasper, L., Klein, D., & Drummond, N. (2025). Identifying the need for care in rheumatoid arthritis: A Candidacy 2.0 analysis of lived experiences. Social Science & Medicine, 374, 118040. https://doi.org/https://doi.org/10.1016/j.socscimed.2025.118040
  • Pham, A., Koehn, S. D., Drummond, N., Garrison, S., Barber, C. E. H., Klein, D, Jasper, L, & Jones, C. (2026). Prednisone Prescribing for Rheumatoid Arthritis in Primary Care: A Mixed Methods Study of Trends and Patient Perspectives. Canadian Family Physician, (accepted)

Conference Presentations

  • Jones A, Pham A, Koehn S, Widdifield J, Drummond N, Jasper L, Klein D, Lindeman C, Barber C. Bridging the Gap: Prednisone Use Patterns in Primary Care Reveal Challenges in Rheumatoid Arthritis Management and Access to Specialist Care. Canadian Rheumatology Association and Arthritis Health Professions Association Annual Scientific Meeting (Calgary) Feb 27, 2025;  J Rheumatol. 2025; 52 Suppl 2: 57 [Abstract 29].
  • Jones A, Pham A, Drummond N, Widdifield J, Koehn S Jasper L, Klein D, Lindeman C, Barber C. DMARD Utilization Patterns in Community-Dwelling Rheumatoid Arthritis Patients: Insights from Linked Primary Care and Pharmaceutical Data. Canadian Rheumatology Association and Arthritis Health Professions Association Annual Scientific Meeting (Calgary) Feb 27, 2025; J Rheumatol. 2025; 52 Suppl 2: 56 [Abstract 28].
  • Pham, A. N. Q., Drummond, N., Jasper, L., Koehn, S., Jones, C.A. Insights from Linking Primary Care and Administrative Data for Rheumatoid Arthritis Canadian Association for Health Services and Policy Research (CAHSPR), (Ottawa , ON) May, 2025.
  • Jasper L, Koehn S, Drummond N, Pham A, Jones A. Enhancing Access to Physiotherapy in Rheumatoid Arthritis Care: A Critical Examination and Extension of the Candidacy Framework World Physiotherapy Congress (Tokyo, JPN) May, 2025 [Abstract 1701]
  • Koehn S, Jones CA, Barber C, Jasper L, Pham A, Lindeman C, Drummond N. Candidacy 2.0-unraveling health inequities in chronic condition care access. Innovation in Ageing Aug 2024 8: s1: 1192 abstract citation id: igae098.3816 doi: 10.1093/geroni/igae098.3816
  • Jones A. Koehn S, Barber C, Jasper L, Pham ANQ, *Lindeman C, Drummond N. Candidacy 2.0 (CC): Unraveling Complexity in Geriatric Health Inequities to Drive Transformative Change (#659) Canadian Association on Gerontology 53rd Annual Scientific and Educational Meeting (Edmonton) Oct 14, 2024 [Abstract LB18]
  • Kohn S, Jones CA, Barber C, Jasper L, Pham A, Drummond N. Accessing care for Rheumatoid Arthritis: The role of family physicians  Alberta Family Medicine Summit (Banff, AB) Mar 1, 2024
  • Pham A, Barber C, Drummond N, Jones CA. Machine learning approaches to identify chronic conditions in electronic medical record data. 30th  Annual Conference of the International Society for Quality of Life Research (Calgary, AB) October 18-21, 2023, Abstract Supplement Quality of Life Research 2023: 32 (Suppl 2): S160 [Abstract 1079]
  • Koehn S, Pham A, Barber C, Lindeman C, Drummond N, Jones CA. Accessing care for rheumatoid arthritis: A critical interpretive synthesis  Canadian Rheumatology Association and Arthritis Health Professions Association Annual Scientific Meeting (Quebec City) Feb 3, 2022; [Abstract 76] J Rheumatol. 2022; 49(7): 814

 

 

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