Patterns of Symptom Tracking by Caregivers and Patients With Dementia and Mild Cognitive Impairment: Cross-sectional Study.
Taylor V DunnSusan E HowlettSanja StanojevicAaqib ShehzadJustin StanleyKenneth RockwoodPublished in: Journal of medical Internet research (2022)
Our results emphasize the importance of patient-centricity in MCI and dementia studies and illustrate the valuable real-world evidence that can be collected with digital tools. Here, the most frequent symptoms across the stages reflected our understanding of the typical disease progression. However, the symptoms that were ranked as most personally important by users were generally among the least frequently selected. Through individualization, patient-centered instruments such as myGoalNav can complement standardized measures by capturing these infrequent but potent outcomes.