Sleep Deficiency in Youth with Systemic Lupus Erythematosus: Associations with Symptoms of Pain, Fatigue, and Mood, Beliefs About Sleep, and Sleep Hygiene Practices

Abstract

Background: Systemic Lupus Erythematosus (SLE) is a chronic, autoimmune disease, requiring frequent medical visits. Approximately 10-20% of new SLE diagnoses occur prior to age 18. Youth with SLE commonly experience symptoms including pain, fatigue, and depressed mood. Sleep deficiency, poor sleep hygiene practices, and irregular sleep are also common, and interrelated with symptoms of pain, fatigue, and depressed mood. Although sleep deficiency is a modifiable behavior, less is known about beliefs and attitudes about sleep in youth with SLE that may contribute to perpetuating and/or exacerbating sleep deficiency. Purpose: The overall purpose of the dissertation was to understand sleep deficiency and its association with symptoms of pain, fatigue, and depressed mood, beliefs about sleep, and sleep hygiene practices in youth with SLE. Paper 1 described sleep patterns, sleep deficiency, sleep regularity, and symptoms of pain, fatigue, and depressed mood in youth with SLE compared to Typically Developing (TD) youth. Paper 2 examined the temporal daily relationships between sleep deficiency and pain intensity in youth with SLE. Paper 3 described and investigated the associations among beliefs about sleep, sleep hygiene practices, and sleep deficiency in youth with SLE. Methods: The three papers in this dissertation were descriptive cross-sectional studies. Participants included 23 youth diagnosed with SLE (ages 11 - 18 years) and their caregivers. Youth wore actigraphy for 10 days in conjunction with using an electronic daily sleep diary and completed surveys: pain, fatigue, depressed mood, Dysfunctional Belief About Sleep (DBAS), and sleep hygiene practices, sleep quality. Caregivers completed surveys about demographic information. Results: Youth with SLE reported more wake after sleep onset, poor sleep quality, and irregular sleep compared to TD youth. Symptoms of pain, fatigue, and depressed mood were negatively associated with sleep deficiency, but not with sleep regularity in youth with SLE. In terms of the temporal relationship between sleep and pain, shorter Total Sleep Time (TST) was associated with higher next-day morning pain. However, evening pain was not associated with daily nighttime sleep in the reverse analyses. Sleep hygiene practices were positively associated with DBAS and sleep quality, while DBAS was marginally associated with sleep quality. Conclusions: Inadequate amount of sleep, poor sleep quality, and irregular sleep were common in youth with SLE. SLE was also associated with increased symptoms of pain, fatigue, and depressed mood. Specifically, youth had decreased TST experience higher pain on a day-to-day basis. Findings suggest that sleep might be a potential target to manage symptoms of pain, fatigue, and depressed mood in youth with SLE. Health care providers should pay attention to assess sleep deficiency as well as comorbid symptoms. Moreover, sleep intervention targeting improving DBAS and sleep hygiene practices will alleviate sleep deficiency. Findings from this dissertation are a foundation to develop an intervention to improve sleep outcomes and health-related quality of life for youth with SLE.