Arthritis Health Journal – An Innovative Online Self-Management Tool for Rheumatoid Arthritis Patients

 

 

Scientific Study Title:

Development and Pilot Testing of a Patient Passport for Rheumatoid Arthritis

 

 

Study Start Date:

2012-10-01

Study End Date:

2015-09-30

 

 

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.

 

 

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.

 

 

Who Was 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.

 

 

The Research Team

Principal Investigator:

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

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)

 

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

 

 

 

Who Funded This Research?

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

 

 

 

Presentations & Publications

Oral Presentations

AL Osaimi, N; Carruthers E; Goldsmith C; Adam P; Lacaille D. Podium Presentation. American College of Rheumatology Annual Meeting. October 2013. San Diego, CA,

Can Rheumatoid Arthritis Patients Self-Monitor Their Disease Activity?  (PDF)

Poster Presentations

Presented at the 2013 British Columbia Alliance on Telehealth Policy and Research (BCATPR) Workshop.

Presented at the 2013 University of British Columbia Resident Research Day.

Presented at the 2013 American College of Rheumatology meeting.

Presented at the 2014 Canadian Rheumatology Association meeting.

Presented at the 2014 Canadian Rheumatology Association meeting.

Presented at the 2015 Canadian Rheumatology Association meeting.

Presented at the 2015 American College of Rheumatology meeting.

Presented at the 2016 Canadian Rheumatology Association meeting.

 

Publications

Abstracts:

  1. Carruthers E, Adam P, Horlock H, Li LC, Townsend A, Goldsmith CH, Mitchell B, Lacaille D. Development and usability testing of the Arthritis Health Journal: An online tool to promote self-monitoring in people with rheumatoid arthritis. Arthritis Rheum 2013;65(10):S420
  2. AL Osaimi N, Carruthers E, Goldsmith CH, Adam P, Lacaille D. Can people with rheumatoid arthritis self-monitor their disease activity? Arthritis Rheum 2013;65(10):S724
  3. Carruthers E, AL Osaimi N, Goldsmith CH, Adam P, Lacaille D. Using patient reported outcome measures to classify disease activity states in rheumatoid arthritis: A comparison of patient-derived versions of Clinical Disease Activity Index (CDAI), Simplified Disease Activity Index (SDAI) and Disease Activity Score 28 (DAS28). Arthritis Rheum Oct 2014;66(11):S177.
  4. Adam P, Carruthers E, Horlock H, Li L, Ellert G, Townsend A, Goldsmith C, Mitchell B, Lacaille D. Development and usability testing of the Arthritis Health Journal: An online tool to promote self-monitoring with rheumatoid arthritis. J Rheumatol. 2014;41(7):1550.
  5. Carruthers E, AL Osaimi N, Goldsmith CH, Adam P, Lacaille D. Using patient reported outcome measures to classify disease activity states in rheumatoid arthritis: A Comparison of Patient Activity Score (PAS) and Routine Assessment of Patient Index Data (RAPID). Arthritis Rheum Oct 2014;66(11):S163
  6. Lacaille D, Carruthers E, van As B, Goldsmith CH, Horlock H, Li LC, Townsend A, Mitchell B, Adam P. Proof of concept study of the Arthritis Health Journal: an online tool to promote self-monitoring in people with rheumatoid arthritis. Arthritis Rheum Oct 2015;67(suppl10):S2814-2815.
  7. Carruthers E, AL Osaimi N, Goldsmith CH, Adam P, Lacaille D. Using Patient Reported Outcome Measures to Classify Disease Activity States in Rheumatoid Arthritis: A Comparison of Patient Activity Score (PAS) and Routine Assessment of Patients Index Data (RAPID). J Rheumatol 2015 42;(7):1289.
  8. Carruthers E, AL Osaimi N, Goldsmith CH, Adam P, Lacaille D. Using Patient Reported Outcome Measures to Classify Disease Activity States in Rheumatoid Arthritis: A Comparison of Patient-Derived Versions of Clinical Disease Activity Index, Simplified Disease Activity Index and Disease Activity Score 28. J Rheumatol 2015 42;(7):1291
  9. Lacaille D, Carruthers E, van As B, Goldsmith C, Horlock H, Li L, Townsend A, Mitchell B, Adam P. Proof of Concept Study of the Arthritis Health Journal: An Online Tool to Promote Self-Monitoring in People with Rheumatoid Arthritis (RA). J Rheumatol 2016;43(6)1228.

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