Background: Social media data may be especially effective for studying diseases associated with high stigma, such as Alzheimer's disease (AD).
Objective: We primarily aimed to identify issues/challenges experienced by patients with AD using natural language processing (NLP) of social media posts.
Methods: We searched 130 public social media sources between January 1998 and December 2021 for AD stakeholder social media posts using NLP to identify issues/challenges experienced by patients with AD. Issues/challenges identified by ≥10% of any AD stakeholder type were described. Illustrative posts were selected for qualitative review. Secondarily, issues/challenges were organized into a conceptual AD identification framework (ADIF) and representation of ADIF categories within clinical instruments was assessed.
Results: We analyzed 1,859,077 social media posts from 30,341 AD stakeholders (21,011 caregivers; 7,440 clinicians; 1,890 patients). The most common issues/challenges were Worry/anxiety (34.2%), Pain (33%), Malaise (28.7%), Confusional state (27.1%), and Falls (23.9%). Patients reported a markedly higher volume of issues/challenges than other stakeholders. Patient posts reflected the broader scope of patient burden, caregiver posts captured both patient and caregiver burden, and clinician posts tended to be targeted. Less than 5% of the high frequency issues/challenges were in the "function and independence" and "social and relational well-being" categories of the ADIF, suggesting these issues/challenges may be difficult to capture. No single clinical instrument covered all ADIF categories; "social and relational well-being" was least represented.
Conclusion: NLP of AD stakeholder social media data revealed a broad spectrum of real-world insights regarding patient burden.
Keywords: Alzheimer’s disease; dementia; mild cognitive impairment; natural language processing; online social networking; patient reported outcome measures; social media.