Xingyuan Li,1,2,* Fenghao Yang,3,* Nan Li,4,* Yong Xu,5 Fang Liu1,2 

1Department of Nephrology, West China Hospital, Sichuan University, Chengdu, Sichuan, People’s Republic of China; 2Laboratory of Diabetic Kidney Disease, Kidney Research Institute, Department of Nephrology, West China Hospital, Sichuan University, Chengdu, Sichuan, People’s Republic of China; 3Department of Clinical Medicine, Southwest Medical University, Luzhou, Sichuan, People’s Republic of China; 4Department of Psychiatry, Southwest Medical University, Luzhou, Sichuan, People’s Republic of China; 5Department of Endocrinology and Metabolism, The Affiliated Hospital of Southwest Medical University, Luzhou, Sichuan, People’s Republic of China

*These authors contributed equally to this work

Correspondence: Fang Liu, West China Hospital, Sichuan University, #37 Guoxue Alley, Wuhou District, Chengdu, Sichuan, 610041, People’s Republic of China, Tel +86-28-18980601214, Fax +86-28-85422335, Email liufangfh@163.com

Background: Diabetic kidney disease (DKD) patients require comprehensive disease education and mutual support to cope with various challenges. Social media platforms provide opportunities for DKD patients to access information and interact with peers. However, qualitative analysis of DKD patients’ real-world concerns and needs on social media is lacking.
Methods: A qualitative study was conducted to analyze DKD patients’ posts on Facebook and Baidu DKD-specific forums from June 2013 to June 2023. Posts were retrieved, and the forum with the most DKD-related posts from each platform was selected using stratified random sampling. Thematic analysis was performed to identify common themes, which were categorized and quantified.
Results: In total, 746 DKD-related posts were analyzed, generating 203 keyword categories with 954 tags. Three main themes emerged: Diagnosis and Comorbidities (50.2%), Treatment and Prevention (29.7%), and Lifestyle and Psychology (20.1%). Patients were most concerned about DKD diagnosis, staging, comorbidities, and interpreting diagnostic indicators. They also sought information on treatment advancements, medications, renal replacement therapies, and traditional Chinese medicine. Diet, exercise, work-life balance, family planning, and mental well-being were key lifestyle and psychological concerns.
Conclusion: This study reveals DKD patients’ primary needs and concerns on social media, which can guide healthcare professionals in providing targeted education and support. Meeting patients’ needs through comprehensive education and counseling can improve treatment adherence and prognosis, though challenges remain in addressing all issues in real-world practice.

Keywords: diabetic kidney disease, qualitative research, patient education, social media