Background/Purpose: Sleep disturbances, including difficulty initiating sleep, maintaining sleep, and/or early morning awakenings are prevalent among persons with lupus and have been shown to contribute to worsening of symptoms including fatigue, pain, depression and health related quality of life. Cognitive behavioral therapy for insomnia (CBTi) is considered first-line treatment for insomnia, but accessibility is limited. Internet delivered CBTi has the potential to overcome accessibility barriers. To guide the tailoring of an internet delivered CBTi for persons with lupus experiencing insomnia, an on-line needs assessment was conducted to identify help-seeking behaviors, strategies for managing insomnia and treatment preferences among persons with lupus.

Methods: We conducted a cross-sectional on-line survey with 119 individuals with lupus (mean age = 47.4 years ± 13.7) recruited through social media ads posted by Lupus Canada and other Canadian and provincial lupus Facebook pages. Participants completed self-report questions assessing their sleep quality, insomnia symptoms (Insomnia Severity Index – ISI), help-seeking behaviors, barriers to help-seeking, treatment preferences for sleep problems and sociodemographics. Means, medians, and percentages were calculated for continuous values, and percentages were calculated for categorical values.

Results: Of the total sample in the past year, 46% had used at least once prescription medications and 37.2% had used over the counter medication to specifically facilitate sleep. Among participants with probable insomnia (ISI score ≥ 8, n=103), 71.3% had ever discussed their sleep problem with a health care provider and 44.6% perceived a need to talk to a health care provider about their sleep problems in the past year but decided not to seek care. Most commonly endorsed reasons for not seeking treatment were perceptions of insomnia as a problem that one should be able to handle on one’s own (54.8%), that insomnia gets better by itself (50%), or that insomnia is not amenable to change (48.9%). Among patients with probable insomnia, 45.4% rated medication treatment as very acceptable, while 56.7% rated nonmedication treatment as very acceptable, and 98% reported that they would be likely or very likely to try a nonmedication approach delivered over the internet and tailored to lupus to improve sleep.

Conclusion: Given the prevalence, chronicity and adverse consequences associated with insomnia in individuals with lupus, this study suggests that efforts designed to reduce the perception of insomnia as transient and to increase awareness of the effectiveness of behavioral treatments are needed. Behavioral interventions such as CBTi are acceptable to individuals with lupus and these findings will guide the evaluation of an internet delivered CBTi program tailored to persons with lupus experiencing insomnia.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/help-seeking-behaviors-and-treatment-preferences-for-sleep-problems-among-persons-with-lupus/