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Using Topic Modeling to Understand Patients' and Caregivers' Perspectives About Left Ventricular Assist Device:
Semyon Melnikov1, Stav Klein2, Moni Shahar2
1Nursing Department, Steyer School of Health Professions, Faculty of Medical & Health Sciences, Tel Aviv University, Tel Aviv, Israel.
Insights
Patients with left ventricular assist devices (LVADs) and their families discuss key concerns including family support, clothing, infection, power, and self-care. Understanding these topics can improve patient care and communication with healthcare providers.
Area of Science:
- Cardiology
- Biomedical Engineering
- Health Informatics
Background:
- Heart failure (HF) affects over 64 million globally, with left ventricular assist devices (LVADs) crucial for end-stage management.
- Web forums like MyLVAD.com are vital information sources for HF patients and caregivers.
- LVADs serve as a bridge to transplantation or destination therapy due to donor organ scarcity.
Purpose of the Study:
- To identify and analyze the primary topics of discussion among LVAD users and their families on the MyLVAD.com forum.
- To understand the lived experiences and concerns of individuals with LVADs.
- To inform healthcare providers on patient needs for tailored support.
Main Methods:
- Latent Dirichlet Allocation (LDA) topic modeling was employed.
- A visualization tool was used to analyze the identified topics.
- 459 posts from 2015-2023 by LVAD recipients and family members were analyzed.
Main Results:
- Five key themes emerged: family support (39.5%), clothing (23.9%), infection (18.2%), power dependency (12%), and self-care/monitoring (6.3%).
- Subthemes included caregiving roles, comfort, driveline infections, power challenges, and device management.
- Family support and clothing were the most frequently discussed topics.
Conclusions:
- The study highlights critical areas of concern for LVAD patients and their families, emphasizing the need for comprehensive support.
- Insights from this analysis can enhance patient-provider communication and inform the development of targeted interventions.
- Understanding user-generated content on health forums provides valuable perspectives for improving LVAD patient care.
Background:
Heart failure (HF) is a significant global clinical and public health challenge, impacting 64.3 million individuals worldwide. To address the scarcity of donor organs, left ventricular assist device (LVAD) implantation has become a crucial intervention for managing end-stage HF, serving as a bridge to heart transplantation or as a destination therapy. Web-based health forums, such as MyLVAD.com, play a vital role as trusted sources of information for individuals with HF symptoms and their caregivers.
Objective:
We aim to uncover the latent topics within the posts shared by users on the MyLVAD.com website.
Methods:
Using the latent Dirichlet allocation algorithm and a visualization tool, our objective was to uncover latent topics within the posts shared on the MyLVAD.com website. Through the application of topic modeling techniques, we analyzed 459 posts authored by recipients of LVAD and their family members from 2015 to 2023.
Results:
This study unveiled 5 prominent themes of concern among patients with LVAD and their family members. These themes included family support (39.5% weight value), encompassing subthemes such as family caregiving roles and emotional or practical support; clothing (23.9% weight value), with subthemes related to comfort, normalcy, and functionality; infection (18.2% weight value), covering driveline infections, prevention, and care; power (12% weight value), involving challenges associated with power dependency; and self-care maintenance, monitoring, and management (6.3% weight value), which included subthemes such as blood tests, monitoring, alarms, and device management.
Conclusions:
These findings contribute to a better understanding of the experiences and needs of patients implanted with LVAD, providing valuable insights for health care professionals to offer tailored support and care. By using latent Dirichlet allocation to analyze posts from the MyLVAD.com forum, this study sheds light on key topics discussed by users, facilitating improved patient care and enhanced patient-provider communication.
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