Patient and Physician Perspectives on MSdialog, an Electronic PRO Diary in Multiple Sclerosis

患者和医生对MSdialog(多发性硬化症电子患者报告结局日记)的看法

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Abstract

BACKGROUND: MSdialog, a web- and mobile-based software application, captures data on self-administration of subcutaneous interferon β-1a, clinical outcomes, and patient-reported outcomes in patients with multiple sclerosis outside the clinic. METHODS: Patient and healthcare professional reactions to MSdialog were surveyed; participants rated benefits of MSdialog detailed in an explanatory video. A 6-week pilot study of patients with multiple sclerosis then assessed MSdialog usability. After participating in a training teleconference, patients completed weekly health reports via MSdialog, plus two usability surveys (weeks 3 and 6) and an exploratory follow-up telephone interview. RESULTS: Seventy-six patients, 92 neurologists and 40 multiple sclerosis nurses completed the MSdialog benefits survey. Highly motivating benefits for patients included sharing information with healthcare providers and capturing patient-reported outcomes data; healthcare providers were highly motivated by data availability on patient-reported outcomes and adherence. Thirty-nine of 42 enrolled patients completed the pilot study. Overall, 87% of patients stated that completion of patient-reported outcomes with MSdialog fitted in "fairly well" to "extremely well" with their weekly routine. At week 6, 77% of patients were "very satisfied" or "extremely satisfied" with their MSdialog experience; 82% considered it better than previous methods for tracking their health and 95% would recommend using MSdialog. Most patients were highly motivated to use MSdialog; reasons given included "helps me remember what to mention to my doctor". CONCLUSION: MSdialog was considered easy to use and superior to patients' previous methods for tracking health. The ability to provide valuable data to healthcare providers offers the potential to improve patient-physician communication and engagement.

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