Remotely engaged: Lessons from remote monitoring in multiple sclerosis

• Published in: International journal of medical informatics (Shannon, Ireland) Vol. 100; pp. 26 - 31
• Main Authors: Engelhard, Matthew M., Patek, Stephen D., Sheridan, Kristina, Lach, John C., Goldman, Myla D.
• Format: Journal Article
• Language: English
• Published: Ireland Elsevier B.V 01.04.2017
• Subjects: Adult; Disabled Persons - psychology; Disabled Persons - rehabilitation; Fatigue - prevention & control; Feasibility Studies; Female; Humans; Internal Medicine; Internet - utilization; Male; Middle Aged; Monitoring, Physiologic; Multiple sclerosis; Multiple Sclerosis - physiopathology; Multiple Sclerosis - psychology; Multiple Sclerosis - therapy; Other; Patient empowerment; Patient engagement technology; Patient-Centered Care; Patient-provider communication; Patient-reported outcomes; Personalized medicine; Remote Consultation - methods; Reproducibility of Results; Telemedicine - utilization; Multiple sclerosis; Patient-reported outcomes; Patient engagement technology; Personalized medicine; Patient empowerment; Patient-provider communication; patient engagement technology; patient-reported outcomes; patient-provider communication; patient empowerment; multiple sclerosis; personalized medicine
• ISSN: 1386-5056; 1872-8243
• DOI: 10.1016/j.ijmedinf.2017.01.006

•Web-based patient-reported outcome collection is evaluated in multiple sclerosis.•Subjects reliably reported symptoms related to fatigue and mobility through a custom web portal.•A statistically significant decline in adherence occurred over the six month study period.•More disabled subjects completed patient-reported outcomes more frequently.•Tailored content and other innovations are needed to combat declining adherence. 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. 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. 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). 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.