Evaluating more naturalistic outcome measures

Abstract

Objective:In this cohort of individuals with and without multiple sclerosis (MS), we illustrate some of the novel approaches that smartphones provide to monitor patients with chronic neurologic disorders in their natural setting.Methods:Thirty-eight participant pairs (MS and cohabitant) aged 18–55 years participated in the study. Each participant received an Android HTC Sensation 4G smartphone containing a custom application suite of 19 tests capturing participant performance and patient-reported outcomes (PROs). Over 1 year, participants were prompted daily to complete one assigned test.Results:A total of 22 patients with MS and 17 cohabitants completed the entire study. Among patients with MS, low scores on PROs relating to mental and visual function were associated with dropout (p < 0.05). We illustrate several novel features of a smartphone platform. First, fluctuations in MS outcomes (e.g., fatigue) were assessed against an individual's ambient environment by linking responses to meteorological data. Second, both response accuracy and speed for the Ishihara color vision test were captured, highlighting the benefits of both active and passive data collection. Third, a new trait, a person-specific learning curve in neuropsychological testing, was identified using spline analysis. Finally, averaging repeated measures over the study yielded the most robust correlation matrix of the different outcome measures.Conclusions:We report the feasibility of, and barriers to, deploying a smartphone platform to gather useful passive and active performance data at high frequency in an unstructured manner in the field. A smartphone platform may therefore enable large-scale naturalistic studies of patients with MS or other neurologic diseases.

Adherence and Satisfaction of Smartphone- and Smartwatch-Based Remote Active Testing and Passive Monitoring in People With Multiple Sclerosis: Nonrandomized Interventional Feasibility Study

“…A recent large-scale study demonstrated that more than 95% of people with multiple sclerosis have access to a mobile device and most use it routinely [10]. Recently published studies have described the use of technologies in developing tools to assess people with multiple sclerosis [7,9,11-13]. In a recent study, it was reported that both healthy participants and people with multiple sclerosis were capable of completing daily tasks on a smartphone for 1 year [7].…”

Association of Continuous Assessment of Step Count by Remote Monitoring With Disability Progression Among Adults With Multiple Sclerosis

“…Although there was a modest reduction in the number of people providing valid accelerometer data (≥1 week per month) during the study, as depicted in Figure 1A, adherence to and use of the accelerometer was higher than might be expected from surveying the literature in the general population 27,28 or among individuals with MS. 29 Proactive study management strategies might account for the relatively favorable retention rate in our study. It will be important for future studies to optimize monitoring strategies and retention for this critical subset of patients with MS.…”

Identifying and Quantifying Neurological Disability via Smartphone

“…Measuring neurological functions by patients via smartphones ( 6 – 8 ) may pose a solution for all aforementioned problems, while additionally empowering patients for greater participation in their neurological care. We have previously found comparable sensitivity and specificity of simple, smartphone-amenable measurements of finger and foot taps to 9HPT and 25FW, respectively ( 9 ).…”