Newland Pamela, Bettencourt B Ann, Schares Sarah, Hendricks-Ferguson Verna
Int J MS Care. 2021 Jul-Aug;23(4):157-161. doi: 10.7224/1537-2073.2019-108. Epub 2021 Jan 21.
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.
A preselected 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.
Most participants found journal writing acceptable as a method for writing about symptoms. Participants were able to write about symptoms that formed clusters: and . 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.
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.
成年多发性硬化症（MS）患者会经历多种复杂症状。然而，关于记录其症状体验的最佳方法的研究尚缺。本研究的主要目的是测试通过撰写日记来记录成年MS患者所经历的核心症状描述的可行性。次要目的是收集自我报告的症状数据，以评估日记记录与MS相关症状清单（MS-RS）评分之间的一致性。
从16名MS患者的总样本中预先选定一组参与者（n = 5），要求他们完成修订后的MS-RS，并在4周内连续4天每天进行20分钟的基于网络的日记撰写。通过日记完成率评估可行性。
大多数参与者认为撰写日记是一种记录症状的可接受方法。参与者能够写出形成群组的症状：以及。同样，参与者从修订后的MS-RS中报告了频繁疲劳、睡眠困难、不耐热以及注意力不集中/认知问题。修订后的MS-RS数据与日记记录之间的不一致包括日记中未披露睡眠困难和“刺痛感”。
本研究的初步结果提供了成年MS患者所经历的核心症状的个人观点。这些结果为撰写日记以及自我报告调查描述成年MS患者症状的可行性提供了初步证据。
