Background/Purpose: Patient passports have been used
in chronic diseases to promote active involvement of patients in their care. In
RA, patient monitoring of their disease activity could facilitate the treat to
target approach by providing early warning signs when disease is not controlled.
The Arthritis Health Journal (AHJ) is a patient-centered online tool
that helps patients track symptoms, monitor disease activity and develop
action plans. We performed a proof of concept study to assess its use in people
with RA.

Methods: Participants, recruited from arthritis clinics,
consumer newsletters and advertisements, were randomly assigned (1:1) to the
immediate; or the delayed group, which received the intervention after 6 months.
 Participants were provided with online access to the AHJ and asked to use it
for 6 mos (no frequency specified). The tool consists of 6 sections: 1) symptom
and exercise log; 2) disease activity assessment; 3) mood assessment; 4)
medical information; 5) goals and action plans; 6) health reports. On-line
questionnaires every 3 months evaluated frequency of use, satisfaction,
self-management, consumer effectiveness, and health status. Semi-structured
interviews were conducted on a purposive sample selected to represent a range
of experiences with the AHJ.

Results: 94 participants were recruited (45 immediate/49
delayed groups); mostly women (88.3%), Caucasian (78%), with post-secondary or
higher education (88.3%), and a mean (SD) age of 52.9 (11.0) yrs and RA
duration of 12.5 (10.6) yrs. The AHJ was used less frequently than expected, likely
because participants were not instructed about how often to use it. Disease
activity and mood assessment were the most frequently used sections [median (25Q;
75Q) frequency of use over 3 mos: 1.5 (0; 3) and 1.5 (0; 4), resp., with 35%
not using the disease activity section over 3 mos and 29% using it > 3
times. User satisfaction was mod to high across sections (median varying from 6.0
to 7.3 on 1-10 scale), with highest satisfaction with the disease activity
section. In preliminary analyses of 6-month data, no significant differences
were observed in consumer effectiveness attributes or in health status. Perceived
benefits of the AHJ mentioned in interviews included enhanced self-awareness, ability
to see relationships between symptoms and trends over time in symptoms and
disease activity, which was felt to facilitate medical-decision making during medical
visits. Barriers to use included lack of perceived need when disease was
stable, well-controlled or longstanding (stating they would have used it at
disease onset), internal factors (e.g. fatigue, unwillingness to focus on
disease, denial), external factors (lack of time due to life events). Those who
found AHJ beneficial tended to use it more frequently. 

Conclusion: Our proof of concept study shows that
people were satisfied with the AHJ, but many did not use it frequently for a
variety of reasons. No difference between groups were detected in consumer
attributes or health status in preliminary analyses; however, the 6-month
timeline might be short to expect such difference. A number of benefits were
identified, esp. in people who used it frequently.