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Arthritis Health Journal: An innovative online self-management tool for Rheumatoid Arthritis patients
Rheumatoid-Arthritis-7.0-1
Scientific Study Title:
Development and Pilot Testing of a Patient Passport for Rheumatoid Arthritis
Start Date:
  • 2012
End Date:
  • 2015
Research Category
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Why did we do this research?

People who are actively involved in the management of their chronic disease tend to be more successful in reaching their health goals and have better treatment outcomes. In rheumatoid arthritis (RA), it is important to start medications early and to escalate treatment until the patient has reached a level of low disease activity or remission. The Arthritis Health Journal (AHJ) was developed to help patients monitor their symptoms, track their disease activity, and develop action plans with their rheumatologists that will help them manage their rheumatoid arthritis. This online tool can provide early warning when targets are not being met so that treatment can be modified as needed.

People who are actively involved in the management of their chronic disease tend to be more successful in reaching their health goals and have better treatment outcomes. In rheumatoid arthritis (RA), it is important to start medications early and to escalate treatment until the patient has reached a level of low disease activity or remission. The Arthritis Health Journal was developed to help patients monitor their symptoms, track their disease activity, and develop actions plans with their rheumatologists that will help them manage their rheumatoid arthritis. This online tool can provide early warning when targets are not being met so that treatment can be modified as needed.

What did we do?

We recruited participants from arthritis clinics, newsletters and advertisements and randomly assigned them to two groups – one group had immediate access to the AHJ whereas the other group received the AHJ after 6 months. All participants had online access to the AHJ for 6 months (no frequency of use was specified).

The online tool, the Arthritis Health Journal has six sections:

  • 1. Symptom and Exercise Log
  • 2. Disease Activity Assessment
  • 3. Mood Assessment
  • 4. Medical Information
  • 5. Goals and Actions Plans
  • 6. Health Reports
  • We did a preliminary study with 94 people with RA. They all used the tool for 6 months, were able to track their disease activity, and were satisfied with using the tool. Although people started using the Health Journal at different times over 6 months, there were no differences in their health outcomes. Six months may be too short a period to be able to see an impact on health.
  • We evaluated how accurately people assessed their disease activity by comparing their assessments with that of their rheumatologist. We found that the assessments were comparable which suggests that people can correctly assess their own disease activity. That may be helpful in guiding the need for physician visits and medication adjustments.
  • What Did We Find?
  • Interviews with rheumatologists and people with RA showed that both groups thought that using the Arthritis Health Journal provides an accurate assessment of the condition of people with RA between physician visits.
  • People with RA found that using the Arthritis Health Journal would be useful way to check whether the ways they manage their disease were successful.
  • Using the disease activity assessment tool of the Journal allowed people to know if their disease is well controlled or not.

What did we find?

The study is currently undergoing analysis.

The Research Team

Principal Investigator

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

Principal Investigators

  • Diane Lacaille, MD, MHSc, FRCPC Mary Pack Chair in Arthritis Research Senior Research Scientist, Arthritis Research Canada Professor, University of British Columbia
  • Paul Adam, MSW Rheumatology Liaison and Outreach Services Coordinator Mary Pack Arthritis Program

Co-Investigators

  • Paul Adam, Rheumatology Liaison & Outreach Services Coordinator, Mary Pack Arthritis Centre, Vancouver
  • Linda Li, BSc(PT), MSc, PhD, FCAHS, Senior Scientist, Implementation Science, Arthritis Research Canada (University of British Columbia)
  • Anne Townsend, MA, PhD, Affiliate Scientist, Bioethics, Arthritis Research Canada, (Lancaster University)
  • Charlie Goldsmith, PhD Biostatistician, Arthritis Research Canada (2010-2015); Professor, Health Sciences, (Simon Fraser University)
  • Linda Li, BSc(PT), MSc, PhD Senior Research Scientist, Arthritis Research Centre of Canada Associate Professor, University of British Columbia
  • Anne Townsend, PhD Affiliated Scientist, Arthritis Research Centre of Canada Research Associate, Maurice Young Centre for Applied Ethics Charlie Goldsmith, PhD Biostatistician, Arthritis Research Centre of Canada Professor, Health Sciences, Simon Fraser University

Collaborators

  • Bev Mitchell Director of Business, Telehealth and Collaborative Solutions, Vancouver Coastal Health and Provincial Health Services Authority
  • Gwen Ellert, Health Educator
  • Nadia Prestley, Arthritis Patient Advisory Board, Arthritis Research Canada
  • Bev Mitchell Director of Business, Telehealth and Collaborative Solutions, Vancouer Coastal Health and Provincial Health Services Authority
  • Gwen Ellert Health
  • Educator Nadia Prestley Arthritis Patient Advisory Board

Who Funded This Research?

Canadian Rheumatology Association Canadian Initiative for Outcomes in Rheumatology (CIORA)

This research is being funded by a peer-reviewed grant from the C anadian I nitiative for O utcomes in R heumatology c A re (CIORA), a program of the Canadian Rheumatology Association.

How Can People Get Involved?

A team of researchers, health professionals and patients partnered with Microsoft Canada and Telus Health Space to create a way to securely store personal health information. They contracted with the Habanero Consulting Group to design a stylish and easy to use platform for entering information. They also collaborated with the Information Management Information Technology Services (IMITS) of the Provincial Health Services Authority of BC, who volunteered many hours to turn the team’s vision into an effective online tool.

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