title: Remotely engaged: Lessons from remote monitoring in multiple sclerosis.
abstract: 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.
authors.affiliation: Department of Systems and Information Engineering, University of Virginia, P.O. Box 400747, Charlottesville, VA, 22904, USA. Electronic address: mme@virginia.edu.
authors.forename: Matthew M
authors.initials: MM
authors.lastname: Engelhard
authors.affiliation: Department of Systems and Information Engineering, University of Virginia, Charlottesville, VA, USA.
authors.forename: Stephen D
authors.initials: SD
authors.lastname: Patek
authors.affiliation: MITRE Corporation, McLean, VA, USA.
authors.forename: Kristina
authors.initials: K
authors.lastname: Sheridan
authors.affiliation: Department of Electrical and Computer Engineering, University of Virginia, Charlottesville, VA, USA.
authors.forename: John C
authors.initials: JC
authors.lastname: Lach
authors.affiliation: Department of Neurology, University of Virginia, Charlottesville, VA, USA.
authors.forename: Myla D
authors.initials: MD
authors.lastname: Goldman
mesh_terms: D000328:Adult; D006233:Persons with Disabilities / Q000523:psychology / Q000534:rehabilitation*; D005221:Fatigue / Q000517:prevention & control*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D008991:Monitoring, Physiologic; D009103:Multiple Sclerosis / Q000503:physiopathology* / Q000523:psychology / Q000628:therapy; D018802:Patient-Centered Care; D019114:Remote Consultation / Q000379:methods*; D015203:Reproducibility of Results; D017216:Telemedicine / Q000706:statistics & numerical data*
keywords: Multiple sclerosis; Patient empowerment; Patient engagement technology; Patient-provider communication; Patient-reported outcomes; Personalized medicine