Matthew M Engelhard1, Stephen D Patek2, Kristina Sheridan3, John C Lach4, Myla D Goldman5. 1. Department of Systems and Information Engineering, University of Virginia, P.O. Box 400747, Charlottesville, VA, 22904, USA. Electronic address: mme@virginia.edu. 2. Department of Systems and Information Engineering, University of Virginia, Charlottesville, VA, USA. 3. MITRE Corporation, McLean, VA, USA. 4. Department of Electrical and Computer Engineering, University of Virginia, Charlottesville, VA, USA. 5. Department of Neurology, University of Virginia, Charlottesville, VA, USA.
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.
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.
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