Harnessing Social Media Data to Understand Information Needs about Kidney Diseases and Emotional Experiences with Disease Management: Topic and Sentiment Analysis (Preprint)

Abstract

BACKGROUND Kidney diseases encompass a variety of conditions, including chronic kidney disease, acute kidney injury, glomerulonephritis, and polycystic kidney disease. These diseases significantly impact patients' quality of life and healthcare costs, often necessitating substantial lifestyle changes, especially regarding dietary management. However, patients frequently receive ambiguous or conflicting dietary advice from healthcare providers, leading them to seek information and support from online health communities. OBJECTIVE This study aims to analyze social media data to better understand the experiences, challenges, and concerns of kidney disease patients and their caregivers in South Korea. Specifically, it explores how online communities assist in disease management and examines the sentiment surrounding dietary management. METHODS Data were collected from "KidneyCafe," a prominent South Korean online community for kidney disease patients hosted on the Naver platform. A total of 124,211 posts from ten disease-specific boards were analyzed using latent Dirichlet allocation for topic modeling and Bidirectional Encoder Representations from Transformers (BERT)-based sentiment analysis. Additionally, efficiently learning an encoder that classifies token replacements accurately (ELECTRA)-based classification was used to analyze posts related to disease management further. RESULTS The analysis identified six main topics within the community: Family Health and Support, Medication and Side Effects, Examination and Diagnosis, Disease Management, Surgery for Dialysis, and Costs and Insurance. Sentiment analysis revealed that posts related to Medication and Side Effects topic and Surgery for Dialysis topic predominantly expressed negative sentiments. Both significant negative sentiments concerning worries about kidney transplantation among family members and positive sentiments regarding physical improvements post-transplantation were expressed in posts about family health and support. For Disease Management, seven key subtopics were identified, with inquiries about dietary management being the leading topic. CONCLUSIONS The findings highlight the critical role of online communities in providing support and information for kidney disease patients and their caregivers. The insight gained from this study can inform healthcare providers, policymakers, and support organizations to better address the needs of kidney disease patients, particularly in areas related to dietary management and emotional support.