JMIR Publications

ABSTRACT

Background:

Cardiac implantable electronic devices (CIEDs) are used to treat a range of cardiovascular diseases and can lead to significant clinical improvements. Studies evaluating patient experiences of living with these devices, however, have focused disproportionately on implantable cardioverter-defibrillators (ICDs), even though the majority of patients receive a permanent pacemaker (PPM). Additionally, there has been limited evaluation of how people living with a CIED utilize social media to gain insight into their condition.

Objective:

This study aimed to analyze posts from online communities called subreddits on the website Reddit, intended for people living with a CIED, in order to characterize the informational needs and experiences of patients.

Methods:

Reddit was systematically searched for appropriate subreddits, and one was found that could be included in the analysis. A python based web scraping script utilizing the Reddit application programming interface was used to extract 484 posts from this subreddit. The collected data was screened, and 186 posts were excluded from the analysis leaving 298 posts made by 196 participants. The mean (range) age of participants who reported this was 33 (17-72) years old and the majority (n=101) had a PPM. Conventional qualitative content analysis was used to inductively classify the qualitative data collected into codes, subcategories, and overarching categories.

Results:

The analysis yielded five overarching categories: Use of the Subreddit by Participants, Questions and Experiences Related to Living With a CIED, Questions and Experiences Related to Healthcare While Living With a CIED, Psychological Experiences of Living with a CIED, and Physical Sequelae of CIED Implantation. These categories provided insight into the diverse experiences and concerns of participants living with a CIED.

Conclusions:

Social media provides a platform through which patients living with a CIED may share information and provide support to their peers. Participants generally sough information about the experiences of others living with a CIED. This was often done to help overcome a range of challenges faced by participants including the need to adapt to living with a CIED, difficulties with navigating healthcare, psychological difficulties, and various aversive physical sequelae. These challenging experiences may be particularly difficult for younger and physically active patients.