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Can Online Patient Journals Improve MS Care?

Continuous collection of patient-reported outcomes may help neurologists identify patients who would benefit from additional care coordination.


SAN DIEGO—Continuous collection of patient-reported outcomes via a web-based platform may help neurologists identify patients with multiple sclerosis (MS) with active disease who would benefit from additional care coordination, according to a study described at the ACTRIMS 2018 Forum.

MS has a “variable and unpredictable disease course,” said Alexis Ahmad, Director of Clinical Trials for the Georgetown University Department of Neurology in Washington, DC, and colleagues. “Given the chronic and complex nature of MS, patients living with this disease require continuous and specialized care.”

The MS and Neuroimmunology Center at Georgetown University aims to become the first MS center recognized as a Patient-Centered Specialty Practice by the National Committee for Quality Assurance.

To assess whether a web-based platform to capture patient-reported outcomes can help MS practices meet Patient-Centered Specialty Practice standards and achieve MS care goals, the researchers analyzed patient responses in their center’s MS-Advance Study. The MS-Advance Study includes patients from the practice who use a web-based platform to relay patient-reported outcomes in between and at clinic visits.

Patients completed scales and questionnaires at baseline (eg, Modified Fatigue Impact Scale, Patient Health Questionnaire-9, Work Productivity and Activity Improvement Questionnaire, and Treatment Satisfaction Questionnaire for Medication) and journal entries about relapses, mood, energy, nutrition, sleep, and health service or resource utilization. The investigators analyzed responses from patients who completed at least one patient-reported outcome or journal entry between January and August 2017.

Five hundred twenty patients agreed to report outcomes using the online platform; 310 patients completed one or more patient-reported outcome or journal entry. In all, 259 patients reported daily MS symptoms; 212 patients reported three or more daily MS symptoms. The five most common daily symptoms were fatigue, numbness or tingling, leg or foot weakness, poor balance, and muscle tightness or stiffening. In addition, 257 patients reported a relapse in the last year. Using the online journal, six patients reported being “severely limited” in their ability to carry out their usual activities.

“It is challenging for providers and clinicians to incorporate routine review of patient-reported outcomes into their clinic schedules,” the researchers noted. Strategies for reviewing patient-reported outcomes in clinic and eliciting more complete and timely patient reports are warranted, they said.

“Use of an online platform provides an opportunity to learn about patients’ daily experiences. Understanding these experiences can inform care strategies to address total functionality and other clinical outcomes.”

—Jake Remaly

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