Remotely engaged: Lessons from remote monitoring in multiple sclerosis

Abstract

Objectives Evaluate web-based patient-reported outcome (wbPRO) collection in MS subjects in terms of feasibility, reliability, adherence, and subject-perceived benefits; and quantify the impact of MS-related symptoms on perceived well-being. Methods Thirty-one subjects with MS completed wbPROs targeting MS-related symptoms over six months using a customized web portal. Demographics and clinical outcomes were collected in person at baseline and six months. Results Approximately 87% of subjects completed wbPROs without assistance, and wbPROs strongly correlated with standard PROs (r > 0.91). All wbPROs were completed less frequently in the second three months (p < 0.05). Frequent wbPRO completion was significantly correlated with higher step on the Expanded Disability Status Scale (EDSS) (p = 0.026). Nearly 52% of subjects reported improved understanding of their disease, and approximately 16% wanted individualized wbPRO content. Over half (63.9%) of perceived well-being variance was explained by MS symptoms, notably depression (rs = −0.459), fatigue (rs = −0.390), and pain (rs = −0.389). Conclusions wbPRO collection was feasible and reliable. More disabled subjects had higher completion rates, yet most subjects failed requirements in the second three months. Remote monitoring has potential to improve patient-centered care and communication between patient and provider, but tailored PRO content and other innovations are needed to combat declining adherence.

Barriers to and Facilitators of Engagement With Remote Measurement Technology for Managing Health: Systematic Review and Content Analysis of Findings (Preprint)

“…In Engelhard et al [9] some participants felt that questions were irrelevant to them, and did not want to continue reporting symptoms which showed no sign of change. Cultural relevance of study support materials was also reported to enhance engagement [25]; however, this was a qualitative study that provided no evidence of how it enhanced engagement.…”

“…Some studies reported that problems such as 'creating user accounts, answering intake question and navigating content due to unexpected behavior of keyboards, scroll bars, buttons, and other interface widgets' could be addressed with minor adjustments [22] although the authors provided no data on changes that had improved engagement. Engelhard et al [9] reported that where technical difficulties arose all could be solved by a phone call with the study coordinator, again the authors offered no data to back up this claim.…”

“…This variability severely limited quantified conclusions. For the few studies that reported the average percentage of time used, this ranged from 64-86.5% [8][9][10]. The average total number of interactions varied between 8.5 and 29.7 and may have depended on the type and length of the intervention [6,11,12]; the lowest level of interaction was with video content and the highest with a person via a text message.…”

“…The average numbers of interactions per week also varied between 3.5 [13], and 12 times per week [14]. The average percentage of people who wore the wearable device for the duration of the study ranged from 50-75% [15,16] and the percentage of people meeting a pre-specified threshold for adherence varied from 41.7-81.8% [7,9,12,17]. Although studies reported varying degrees of attrition [10, 13,18], dropout rate reporting was more frequent and ranged from 0-44% with a mean of 11.0% (SD = 11.4).…”

“…Digital literacy and other practical barriers have been overcome through offering instructions and support from the study co-ordinator [9,28]. Research into the type of support necessary to increase engagement was lacking.…”