Assessing information needs and use of online resources for disease self-management in patients with rheumatoid arthritis: a qualitative study

To explore the information needs of patients with rheumatoid arthritis (RA) and their acceptance of online resources and Facebook in particular, as a source of information, interaction, and support among peers. Participants were adults with RA of ≤ 10 years duration, had ongoing or prior treatment with disease-modifying anti-rheumatic drugs or biologic agents, and internet access. We conducted 20 in-depth interviews using semi-structured interview guide to explore: (1) RA information needs, (2) use of self-management health behaviors, (3) use of internet resources for disease management, (4) role of peer support in health self-management, and (5) use of social networking sites (SNS) such as Facebook in disease management. Data were analyzed using content analysis and constant comparative methods. Participants were mainly female (85%), White (70%), and over 50 years old (70%). Specific information needs included knowledge regarding medications, disease course, pain control, diet, and exercise. Most participants had a narrow perception of SNS as a tool for disease management. However, they found SNS acceptable and were open to participating in a support group on Facebook with reasonable assurance of privacy. Although the overarching theme was RA information needs, the other themes contribute in supporting the robust emergence of Internet media in informing patients about their health and support systems. Our findings can inform the choice and format of materials to be considered for online education on self-management and social networking for RA patients.