Assessing the information needs of patients implanted with a left ventricular assist device via analysis of social media forums

Abstract

Background Left Ventricular Assist Devices (LVADs) serve as a feasible treatment alternative for patients with end-stage heart failure who do not respond sufficiently to maximal medical therapy. An increasing number of individuals with end-stage heart failure, both pre- and post-LVAD implantation, are utilizing social media to find medical information and peer support. Purpose The objective of this study was to identify unmet education and information needs of patients with LVAD through social media interactions. Methods In this research, information was gathered from the forum section of the website MyLVAD.com through an automated extraction technique. We conducted an anonymous collection and analysis of a dataset from MyLVAD.com, which comprised 459 forum threads and 3886 messages across the entire forum, contributed by 945 unique users. To establish a matrix addressing existing information and educational needs, we examined 867 posts and conversations that contained questions and inquiries, ultimately identifying a total of 435 concrete questions. A series of categorization matrices were developed and updated to facilitate the discovery of new categories. Results Numerous information gaps and unanswered questions were discovered in relation to the following areas: clothing, complications/adverse events, LVAD pros and cons, self-care, therapy, and recent LVAD implantation. Among the 435 questions, 216 (49.7%) questions had a primary focus on self-care for patients with LVAD, including subjects such managing the driveline site, understanding equipment functionality, and adapting lifestyle habits to ensure safety and health while living with an LVAD. Two other major question categories emerged: those regarding complications/adverse effects, comprising 80 questions (18.4%), and those discussing the pros and cons of LVAD, with 67 questions, accounting for 15.4%. Conclusion The social media data retrieved from MyLVAD.com is the first to be used to assess the unmet needs and knowledge gaps among patients implanted with LVAD and develop categories to describe LVAD patient knowledge and information needs. Unlike investigator-generated data, social media data reflect the natural and organic conversation between patients, untainted by investigator agendas or biases. Social media data can enhance our understanding of patient information deficiencies. This can lead to the creation of materials specifically aimed at fulfilling unaddressed educational requirements.Unmet LVAD patients information needs