Patient Information Needs and Decision-Making Before a Cardiac Implantable Electronic Device: A Qualitative Study Utilizing Social Media Data

The decision to receive a cardiac implantable electronic device (CIED) represents a challenging experience for patients. However, the majority of previous research has only considered retrospective accounts of patient experiences. This study aimed to use social media data to characterize the information sought by people anticipating or considering CIED implantation and factors that influence their decision-making experiences. A Python-based script was used to collect posts made to a community intended for discussions concerning CIEDs on the social media platform Reddit. Reflexive content analysis was used to analyze the collected data. From 799 posts collected, 101 made by 86 participants were analyzed. The reported median (range) age of participants was 34 (16–67), and most were anticipating or considering a pacemaker. Three overarching categories classified the data: “Use of social media to meet informational and other needs”; “Factors influencing acceptance of the need for implantation”; and “Specific concerns considered during decision-making.” Participants anticipating or considering a CIED predominantly sought experiential information. Among asymptomatic participants, doubts were prevalent, with acceptance being an influential factor in decision-making. Healthcare professionals should recognize the informational and emotional needs of prospective CIED patients and tailor support mechanisms to better facilitate their decision-making.