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

Abstract

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.

Needs, Experiences, and Views of People With Rheumatic and Musculoskeletal Diseases on Self-Management Mobile Health Apps: Mixed Methods Study

“…The role of self-management in rheumatic and musculoskeletal diseases (RMDs) has become increasingly recognized, especially in support of holistic and patient-centered care [1]. A growing number of patients seek out various sources of information to better understand and manage their disease as part of their quest to take a more active role in their care [2,3]. Self-management refers to "the individual's ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with a chronic condition" [4].…”

Case discussions using WeChat: Are they reliable?

“…Social medical case discussions are popular [21,22], and patients are actively using health networks for the diagnosis or treatment of their diseases. However, we do know that clinical processes, including diagnosis and treatment, are often based on articulation and effective communication among physicians from various disciplines across time and space [10,19].…”

Real-world questions and concerns about disease-modifying antirheumatic drugs (DMARDs): a retrospective analysis of questions to a medicine call center

“…Following on from data completion in 2010, further DMARDs particularly bDMARDs and the targeted synthetic DMARDs have become available for use in Australia and data on these newer agents are therefore lacking [62,63]. Furthermore, patients are more frequently accessing information regarding their medicines from various sources, predominantly online and through social media [64]. This increased exposure to information, as well as the inaccuracies and low readability of the content of many unreliable resources [65], may create different information gaps and concerns among patients not identified by our study.…”