Findings from a social media listening study on Chinese patients with Alzheimer's disease: a content analysis

Abstract

Background: Social media listening is a new approach for gathering insights from social media platforms about users' experiences. This approach has not been applied to analyse discussions about Alzheimer's disease (AD) in China.

Aims: We aimed to leverage multisource Chinese data to gain deeper insights into the current state of the daily management of Chinese patients with AD and the burdens faced by their caregivers.

Methods: We searched nine mainstream public online platforms in China from September 2010 to March 2024. Natural language processing tools were used to identify patients and caregivers, and categorise patients by disease stage for further analysis. We analysed the current state of patient daily management, including diagnosis and treatment, choice of treatment scenarios, patient safety and caregiver concerns.

Results: A total of 1211 patients with AD (66% female, 82% aged 60-90) and 756 caregivers for patients with AD were identified from 107 556 online sources. Most patients were derived from online consultation platforms (43%), followed by bulletin board system platforms (24%). Among the patients categorised into specific disease stages (n=382), 42% were in the moderate stage. The most frequent diagnostic tools included medical history (97%) and symptoms (84%). Treatment options for patients with AD primarily included cholinesterase inhibitors, N-methyl-D-aspartate receptor antagonists and antipsychotics. Both quantitative and qualitative analysis of patients who experienced wandering (n=92) indicated a higher incidence of wandering during the moderate stage of the disease. Most caregivers were family members, with their primary concerns focusing on disease management and treatment (90%), followed by daily life care (37%) and psychosocial support (25%).

Conclusions: Online platform data provide a broad spectrum of real-world insights into individuals affected by AD in China. This study enhances our understanding of the experiences of patients with AD and their caregivers, providing guidance for developing personalised interventions, providing advice for caregivers and improving care for patients with AD.

Keywords: cognition disorders.

Figure 1. Flowchart of stakeholder identification and platform type from which online text was extracted. *Patient information was identified first, and caregiver information was then extracted from the patient-related text based on whether the caregiver perspective exists. AD, Alzheimer’s disease; BBS, bulletin board system.

Figure 2. Overall workflow and algorithm tools used in the study. *Experts will conduct manual checks on the analytical results. AD, Alzheimer’s disease; BBS, bulletin board system; NER, named-entity recognition; LLMs, large language models.

Figure 3. Reasons for patients’ treatment switch in different disease stages. ‘Other factors’ refers to the patient mentioning changes in treatment without specifying the reasons.

Figure 4. Caregiver topics of concern.