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Personal Health Records in Rheumatoid Arthritis: Quality and Adhesion Factors. [...]

Trijau, S., Servy, H., Selamnia, A.M., Pradel, V., Lafforgue, P., Pham, T. (November 2011)

Background/Purpose : Personal Health Records (PHRs) are patient-controlled repositories, capturing health data entered by individuals and providing information related to the care of those individuals. PHRs include tools to help individuals take a more active role in their own health, and include decision-support capabilities that can assist physician in managing chronic conditions such as rheumatoid arthritis (RA). However, barriers to PHRs adoption exist, including economic and legal concerns. Especially, patients must understand and accept their role and responsibilities related to their own health care. Objective: To assess how support measures improve PHRs adoption and to determine factors that influence quality of self recorded data and tool adhesion of RA patients.

Method : Design: controlled randomized study. PHRs tool: SANOIA developed PHRs web tool integrated with electronic health records (EHRs). SANOIA tool is a full privacy protection based on innovative anonymization techniques. Patients: RA patients fulfilling ACR 1987 criteria, with web access, randomized in 3 groups: Group 1 patients were given a written information about how to create and manage a PHR; Group 2 patients received the written information and a nurse support phone-call 48 hours after inclusion as an PHR filling assistance; Group 3 patients filled PHR with their rheumatologist during the consultation. Data collected: demographic data, amount and quality of self recorded data, DAS 28, RAPID 3, ongoing treatment, at baseline and 2 months after. Information quality was compared to rheumatologist medical records (gold standard) and 0-10 scored. Good quality score was defined as >9. Patients were considered as tool adherent if they connected at least twice and as non adherent if they connected once or never. Statistical analysis: Khi-2, Mann-Whitney tests.

Result : We included 56 RA patients (20, 19 and 17 in group 1, 2, 3 respectively), 73% female, 57.1 years mean age, 3.04 mean DAS 28 and 2.93 mean RAPID 3. Self reported data quality was significantly higher in group 2 (73.7%) and 3 (82.4%) than in group 1 (45.0%), (p=0.04). Moreover, a patient reported tuberculosis history and another neoplasia history that were not reported in the physician medical record. Patient adhesion was higher in group 2 (73.7%) compared to group 1 (55.0%) and 3 (58.8%) (p=0.45). Quality was correlated to adhesion (p<0.0001). Gender, age, disease duration and activity (DAS 28, RAPID 3) and treatments including biologics and steroids were not correlated to data quality or patient adhesion.

Conclusion : Information quality collected with PHRs was relevant and better when patients were initially assisted either by their physician or by a non-medical phone support. We observed a trend for a better adhesion when using phone call support at 2 months. A follow-up at month 6 is scheduled to confirm these results.


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