Abstract
BackgroundThe World Wide Web allows access to patient/care partner perspectives on the lived experience of dementia. We were interested in how symptoms that care partners target for tracking relate to dementia stage, and whether dementia could be staged using only these online profiles of targeted symptoms.ObjectivesTo use clinical data where the dementia stage is known to develop a model that classifies an individual’s stage of dementia based on their symptom profile and to apply this model to classify dementia stages for subjects from a Web-based dataset.MethodsAn Artificial Neural Network (ANN) was used to identify the relationships between the dementia stages and individualized profiles of people with dementia obtained from the 60-item SymptomGuide (SG). The clinic-based training dataset (n=320), with known dementia stages, was used to create an ANN model for classifying stages in Web-based users (n=1930).ResultsThe ANN model was trained in 66% of the 320 Memory Clinic patients, with the remaining 34% used to test its accuracy in classification. Training and testing staging distributions were not significantly different. In the 1930 Web-based profiles, 309 people (16%) were classified as having mild cognitive impairment, 36% as mild dementia, 29% as moderate, and 19% as severe. In both the clinical and Web-based symptom profiles, most symptoms became more common as the stage of dementia worsened (eg, mean 5.6 SD 5.9 symptoms in the MCI group versus 11.9 SD 11.3 in the severe). Overall, Web profiles recorded more symptoms (mean 7.1 SD 8.0) than did clinic ones (mean 5.5 SD 1.8). Even so, symptom profiles were relatively similar between the Web-based and clinical datasets.ConclusionSymptoms targeted for online tracking by care partners of people with dementia can be used to stage dementia. Even so, caution is needed to assure the validity of data collected online as the current staging algorithm should be seen as an initial step.
Highlights
The World Wide Web offers new opportunities for understanding disease from a patient’s standpoint, and crucially in dementia, from the standpoint of their caregivers [1]
The Memory Clinic patients were of a similar age to Web users, but more of the latter were women, and fewer Web users lived with family members (Table 1)
The machine-learning algorithm developed in the Memory Clinic training dataset showed virtually the same dementia stage distribution when applied to the testing dataset as did the clinical dementia staging
Summary
The World Wide Web offers new opportunities for understanding disease from a patient’s standpoint, and crucially in dementia, from the standpoint of their caregivers [1]. The clinic-based training dataset (n=320), with known dementia stages, was used to create an ANN model for classifying stages in Web-based users (n=1930). In the 1930 Web-based profiles, 309 people (16%) were classified as having mild cognitive impairment, 36% as mild dementia, 29% as moderate, and 19% as severe. In both the clinical and Web-based symptom profiles, most symptoms became more common as the stage of dementia worsened (eg, mean 5.6 SD 5.9 symptoms in the MCI group versus 11.9 SD 11.3 in the severe). Conclusion: Symptoms targeted for online tracking by care partners of people with dementia can be used to stage dementia. Caution is needed to assure the validity of data collected online as the current staging algorithm should be seen as an initial step
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