Background/Purpose: Patients with chronic disease are increasingly using social networking to share experiences about their disease, and receive peer support. As part of an educational intervention we conducted a qualitative needs assessment to evaluate the information needs of patients with RA and to determine the acceptability of the Internet, and specifically social networking tools such as Facebook (FB), as a source of information and interaction among peers.

Methods: We conducted 20 semi-structured cognitive interviews with adult participants with RA who were diagnosed by a rheumatologist, had ongoing or prior treatment with disease-modifying anti-rheumatic drugs or biologic agents, disease duration <=10 years, and had internet access. Themes explored included: (1) health 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 FB in disease management. Data was organized, sorted and interpreted from the participant’s verbatim responses using Dedoose, a web application to analyze qualitative data.

Results: Participants included 85% females. The majority were White (65%) and 50% were 51-65 years old. Categories identified by the themes mentioned above were (see table): (1) important aspects that patients’ needs to know, source of information, useful information but difficult to get, advice giving to others; (2) self-management health condition and practices, dealing with ongoing health needs and stress, managing medication regularly, support from family and friends; (3) definition of uses of internet such as getting familiar/getting started, frequency of use, familiar or not with internet, self-management/use of internet, daily use, self-management/useful information, preferred learning vehicles; (4) forms of online communication, type of social networking site, purpose and frequency of use, information on, and support from SNS.

Conclusion: Although the dominant theme was RA information needs, the rest of the themes contribute in supporting the robust emergence of Internet media in informing patients about their health. In searching for useful information to manage their condition including activities as exploration of internet sites and interest for FB as support tool, participants are authenticating their need for accurate information on RA to help them managing their condition. The interpretation of these findings will inform the choices and format of educational and self-management materials to be considered for online educational, self-management and social networking tools.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/assessing-information-needs-for-chronic-disease-management-in-rheumatoid-arthritis/