Remotely engaged: Lessons from remote monitoring in multiple sclerosis

Int J Med Inform. 2017 Apr:100:26-31. doi: 10.1016/j.ijmedinf.2017.01.006. Epub 2017 Jan 12.


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.

Keywords: Multiple sclerosis; Patient empowerment; Patient engagement technology; Patient-provider communication; Patient-reported outcomes; Personalized medicine.

MeSH terms

  • Adult
  • Disabled Persons / psychology
  • Disabled Persons / rehabilitation*
  • Fatigue / prevention & control*
  • Feasibility Studies
  • Female
  • Humans
  • Internet / statistics & numerical data*
  • Male
  • Middle Aged
  • Monitoring, Physiologic
  • Multiple Sclerosis / physiopathology*
  • Multiple Sclerosis / psychology
  • Multiple Sclerosis / therapy
  • Patient-Centered Care*
  • Remote Consultation / methods*
  • Reproducibility of Results
  • Telemedicine / statistics & numerical data*