TITLE:
Understanding Patients’ Symptoms Management Using Objective and Subjective Indicators among Patients with Systemic Lupus Erythematosus
AUTHORS:
Kiyoko Makimoto, Kazuko Shiozawa, Yoshihito Shima, Toru Hirano, Mitsuyo Inoue
KEYWORDS:
Symptoms Management, Sleep Indicator, Physical Activity, Pain, Fatigue, QoL
JOURNAL NAME:
Open Journal of Nursing,
Vol.13 No.5,
May
30,
2023
ABSTRACT: Background: Descriptive statistics have been used to document the high prevalence of sleep disorders, fatigue, and pain in patients with systemic lupus erythematosus (SLE). Objectives: To describe day-to-day variations in sleep indicators, physical activity level, pain, and fatigue measured using objective and subjective indicators in lupus patients with sleep disorders. Methods: We selected three patients with sleep disorders, measured by the Pittsburgh Sleep Quality Index score (≥9), out of 20 participants followed up for 4 weeks. We compared the self-rated quality of life (QoL) measured using the Pittsburgh Sleep Quality Index (PSQI) with that of objectively measured sleep indicators monitored using the Nemuri scan. The detailed data collection methods have been previously published. Results: The sleep status generated by the Nemuri scan revealed that Case A with a flare and Case B without a flare required frequent daytime rest. The PSQI sleep duration and sleep latency were generally in agreement with the monitored data, although the PSQI failed to capture the complexity of sleep disorders, particularly the fluctuations in the quality of sleep indicators. Patient C approximately 4 hours on weekdays and 10 hours on Saturday nights. All three cases had high fatigue levels, and their moderate-to-vigorous physical activity duration was less than one-half of duration that recommended by the World Health Association. Conclusion: Visual display for objective monitoring of sleep quality is an excellent tool for understanding patients who require frequent resting and irregular sleep indicators. Objective monitoring of sleep quality, along with self-rated pain and fatigue, promotes an understanding of how patients with SLE cope with severe symptoms.