ArticleNeurology and therapy2023
Understanding Barriers Along the Patient Journey in Alzheimer's Disease Using Social Media Data.
Article in Neurology and therapy, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 12 citations in OpenAlex.
- Caregiver burden and quality of life associated with behavioral and psychological symptoms of Alzheimer's disease: A web-based cross-sectional survey study.Journal of Alzheimer's disease : JAD · 2026Article
- Review
- Mental Health Experiences and Challenges Among Individuals with Myasthenia Gravis: Insights from Patient-Centered, Qualitative Analyses.Advances in therapy · 2025Review
- Findings from a social media listening study on Chinese patients with Alzheimer's disease: a content analysis.General psychiatry · 2025Article
- Anxiety in Alzheimer's disease rats is independent of memory and impacted by genotype, age, sex, and exercise.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Natural language processing in Alzheimer's disease research: Systematic review of methods, data, and efficacy.Alzheimer's & dementia (Amsterdam, Netherlands)Review
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Authors and funding
5 authors at 3 institutions in 3 countries.
Funding
Abstract
introductionWe speculated that social media data from Alzheimer's disease (AD) stakeholders (patients, caregivers, and clinicians) could identify barriers along the patient journey in AD, and that insights gained may help devise strategies to remove barriers, and ultimately improve the patient journey.
methodsOur sample was drawn from a repository of social media posts extracted from 112 public sources between January 1998 and December 2021 using natural language processing text-mining algorithms. The patient journey was classified into three phases: (1) early signs/experiences (Early Signs); (2) screening/assessment/diagnosis (Screening); and (3) treatment/management (Treatment). In the Early Signs phase, issues/challenges derived from a conceptual AD identification framework (ADIF) were examined. In subsequent phases, behavioral/psychiatric challenges, access/barriers to health care, screening/diagnostic methods, and symptomatic treatments for AD were identified. Posts were classified by AD stakeholder type or disease stage, if possible.
resultsWe identified 225,977 AD patient journey-related social media posts. Anxiety was a predominant issue/challenge in all patient journey phases. In the Screening and Treatment phases combined, access/barriers to care were described in 16% of posts; unwillingness/resistance to seeking care was a major barrier (≥ 75% of access-related posts across all stakeholders). Commonly identified structural barriers (e.g., affordability/cost, geography/transportation/distance) were more common in patient/caregiver posts than clinician posts. Among Screening-related posts, imaging/scans were commonly mentioned by all stakeholders; biomarkers were more commonly mentioned by patients than clinicians. Treatment-related concerns were identified in 17% of stakeholder-specified posts that named pharmacological agents/classes for the symptomatic management of AD.
conclusionThis descriptive analysis of out-of-clinic experiences reflected in AD social media posts found that unwillingness/resistance to seeking care was a key barrier, followed by structural barriers to health care, such as affordability/cost. Insights from the lived experiences of AD stakeholders are valuable and highlight the need to improve the patient journey in AD and ease patient and caregiver burden.
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