Patterns of Symptom Tracking by Caregivers and Patients with Dementia and Mild Cognitive Impairment: Cross-Sectional Study (Preprint)

BACKGROUND Individuals who live with dementia or mild cognitive impairment (MCI) experience a variety of symptoms and challenges that trouble them and/or their carers. The usual remedy for this heterogeneity is to employ several standardized tests to cover the variety of problems in cognition, behaviour and function. These tests are used for diagnosis, prognosis, and to track effects of treatment. A complementary approach is to employ individualized measures. MyGoalNav™ Dementia is one such: an online tool that allows impaired individuals and their caregivers to identify and track outcomes of greatest importance to them. Such individualized outcome measurement can be a less arbitrary and more sensitive way of capturing meaningful change. OBJECTIVE To explore the most frequent and important symptoms and challenges reported by caregivers and people with dementia and MCI, and how this varied by disease severity. METHODS This cross-sectional observational study involved 3909 online myGoalNav™ users (mostly caregivers of people with dementia or MCI), who completed symptom profiles between 2007-2019. Users chose from a library of common dementia-related symptoms and challenges their most personally important or troublesome to track over time. Users were also asked to rank their chosen symptoms from least to most important, which we called the symptom potency. As the stage of disease for these online users is unknown, we applied a supervised staging algorithm, previously trained on clinician-derived data, to classify each profile as MCI, into these four stages: MCI, Mild, Moderate and Severe dementia. Across these stages, we compared symptom tracking frequency, symptom potency, and the relationship between frequency and potency. RESULTS The staging algorithm classified 917 MCI, 1596 Mild, 514 Moderate, and 882 Severe dementia profiles. The most frequent symptoms in MCI and Mild profiles were similar and consisted of early hallmarks of dementia (e.g. recent memory, language difficulty). As the dementia stage increased to Moderate and Severe, the most frequent symptoms were characteristic of loss of independent function (e.g. incontinence) and behavioural problems (e.g. aggression). The most potent symptoms were similar between stages, and generally reflected disruptions in everyday life (e.g. problems with hobbies/games, travel, looking after grandchildren). Symptom frequency was negatively correlated with potency at all stages, and the strength of this relationship increased with increasing disease severity. CONCLUSIONS Our results underscore the feasibility and interpretability of patient-centricity in MCI and dementia studies. They 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. The symptoms ranked as most personally important by users, however, were generally among the least frequently selected. Through individualization, patient-centered instruments like myGoalNav™ can complement standardized measures by capturing these infrequent but potent outcomes.