Harnessing Social Media Data to Understand Information Needs About Kidney Diseases and Emotional Experiences With...

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 health care costs, often necessitating substantial lifestyle changes, especially regarding dietary management. However, patients frequently receive ambiguous or conflicting dietary advice from health care providers, leading them to seek information and support from online health communities.

This study aimed to analyze social media data to better understand the experiences, challenges, and concerns of patients with kidney disease and their caregivers in South Korea. Specifically, it explored how online communities assist in disease management and examined the sentiment surrounding dietary management.

Data were collected from KidneyCafe, a prominent South Korean online community for patients with kidney disease hosted on the Naver platform. A total of 124,211 posts from 10 disease-specific boards were analyzed using latent Dirichlet allocation for topic modeling and Bidirectional Encoder Representations From Transformers-based sentiment analysis. In addition, Efficiently Learning an Encoder That Classifies Token Replacements Accurately-based classification was used to further analyze posts related to disease management.

The analysis identified 6 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 the medication and side effects and surgery for dialysis topics predominantly expressed negative sentiments. Both significant negative sentiments concerning worries about kidney transplantation among family members and positive sentiments regarding physical improvements after transplantation were expressed in posts about family health and support. For disease management, 7 key subtopics were identified, with inquiries about dietary management being the leading subtopic.

The findings highlight the critical role of online communities in providing support and information for patients with kidney disease and their caregivers. The insights gained from this study can inform health care providers, policy makers, and support organizations to better address the needs of patients with kidney disease, particularly in areas related to dietary management and emotional support.