Arthritis Health Journal: An innovative online self-management tool for Rheumatoid Arthritis patients

What We've Learned

Scientific Study Title:

Development and Pilot Testing of a Patient Passport for Rheumatoid Arthritis

Start Date:

2012-10-01

End Date:

2015-09-30

Research Category

Arthritis Care, Health Habits & Wellbeing

Why do this research?

Reason For 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.

Methodology

Execution of Research

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.

We held interviews with rheumatologists and people with RA in order to find out what they wanted to see in the Arthritis Health Journal. We gained valuable insight into how the tool may be used to help manage disease and improve communication and teamwork between patients and their rheumatologists. Based on this feedback, we designed and developed a journal that is simple, easy-to-use and provides a positive and engaging environment for managing arthritis. We invited RA patients to use the tool at our test site to get their feedback on the tool’s design and ease-of-use. Their suggestions were used to further refine the journal. Now that development is complete, we are inviting 100 people with RA to test the Arthritis Health Journal. Participants are given online access and asked to use the tool at their leisure for at least six months. They complete questionnaires that will assess the feasibility of using the tool in daily life and evaluate how it influences the care and management of their RA. Several of these participants will also be invited for one-on-one interviews with a member of the research team so that we can gain a deeper understanding of its effectiveness.

Who is involved?

Involvement

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.

Findings & Next Steps

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.

The study is currently undergoing analysis.

Related Publications

Abstracts:

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
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
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.
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.
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
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.
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.
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
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.

The Arthritis Health Journal: An Online Tool for People with Rheumatoid Arthritis

External Partners & Contacts

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

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