Abstract

Background: Adults with multiple sclerosis (MS) experience many complex symptoms. However, research is lacking on the best method to record their symptom experience. The primary goal of this study was to test the feasibility of journal writing to capture the description of core symptoms experienced by adults with MS. A secondary goal was to collect self-report symptom data to assess concordance between the journal entries and MS-Related Symptom Checklist (MS-RS) scores.

Methods: A pre-selected group of participants (n = 5) from the total sample of 16 participants with MS were asked to complete the revised MS-RS and Web-based journal writing for 20 minutes per day for 4 consecutive days over a 4-week period. Feasibility was evaluated by journal completion rates.

Results: Most participants found journal writing acceptable as a method for writing about symptoms. Participants were able to write about symptoms that formed clusters: unpredictable physical alterations and unpredictable sensory and emotional changes. Likewise, participants reported frequent fatigue, difficulty sleeping, heat intolerance, and difficulty concentrating/cognitive problems from the revised MS-RS. Disconcordance between revised MS-RS data and journal entries included lack of disclosure of difficulty sleeping and “pins and needles” in the journals.

Conclusions: Preliminary findings from this study provide the personal perspectives of core symptoms experienced by adults with MS. These results provide preliminary evidence of the feasibility of journal writing, along with self-report survey, to describe symptoms in adults with MS.

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