The Use of Electronic Sleep and Symptom Diaries: A Feasibility Study

Background: MS is an auto-immune disease that affects the central nervous system. Patients suffer from a wide range of symptoms including sleep problems, pain, and fatigue. In this study, we assessed the  feasibility and acceptance of an electronic diary [ED] to help patients maintain a sleep/symptom diary.

Objectives:

To test feasibility and acceptability of electronic sleep and symptom diaries delivered using an email message link to measure sleep and symptoms in patients with MS.

Methods:

A total of 34 consecutive subjects with MS were recruited from an MS Clinic and the surrounding community. Inclusion criteria included knowledge of a computer, the  internet, and the English Language. During the baseline visit, a set of questionnaires was administered to collect information about demographics and sleep. Then the participants were asked to use EDs daily over the course of seven consecutive days, which was repeated 8 weeks later.  The link to the ED was sent via REDCAP data capture program using a semi-structured qualitative patient diary, as well as the SR-EDSS, a Sleep VAS, MS-Related Symptom Scale, and Sleep Behavior Checklist. A total of 28 participants completed the EDs and were included in this analysis.  Statistical analyses were performed using SAS version 9.4.      

Results:

The majority (83%) of participants was female, mean age of 42, and SR-EDSS score of 3.7. Approximately, 15% of participants had Secondary Progressive MS. Participants were highly compliant with diary completion over the entire eight study weeks with 82.3% of diaries completed. Submission rate did not differ across age, gender, or MS subtype. However, there was a trend toward submission difference related to a higher education level. Participants found the methodology to be acceptable ed and felt comfortable participating in the study.

Conclusions:

Findings from this feasibility study provide preliminary evidence for the use of EDs as a sleep and symptom data collection for patients living with MS. Tailoring this technology to patient needs and preferences may improve symptom management and communication in patients with MS.