Electronic Health Diary Campaigns to Complement Longitudinal Assessments in Persons With Multiple Sclerosis: Nested...

Area of Science:

• Digital Health
• Patient-Reported Outcomes
• Neurology

Background:

• Electronic health diaries show potential for prospective health studies.
• Methodological challenges exist in implementing digital health tools.
• Standardized surveys may not capture the full patient experience.

Purpose of the Study:

• Investigate factors influencing electronic health diary response in multiple sclerosis (MS) patients.
• Identify common themes in free-text diary entries.
• Assess the added value of electronic diaries compared to traditional surveys for symptoms and medication tracking.

Main Methods:

• A nested electronic health diary campaign and follow-up survey were conducted.
• Participant characteristics were compared between those who did and did not participate.
• Diary content was analyzed using Linguistic Inquiry and Word Count software.
• Jaccard index was used to compare diary data with survey data.

Main Results:

• Diary participants were older, more often women, not working full-time, and had more gait impairment.
• Free-text entries frequently mentioned negative emotions, body functioning, and health.
• Diary data showed high similarity with survey data for quality of life and stable symptoms.
• Medication intake data also showed high similarity for both regular and oral therapies.

Conclusions:

• Electronic health diaries are a valuable supplement to surveys for detailed symptom and medication information in MS.
• Participation depends on time availability and symptom burden; reminders improve engagement.
• Integrating diaries into promotional activities or study tasks can enhance long-term participation.