Sleep problems are common in primary Sjogren’s syndrome patients and seem to worsen symptoms of fatigue and pain, affecting the ability of patients to perform daily activities, according to researchers from the U.K.
But a focus group study reports Sjogren’s patients are generally open to tailored sleep therapy interventions as long as therapists discuss the rationale behind the strategies.
The study, “Experience of sleep disruption in primary Sjogren’s syndrome: A focus group study,” was published in the British Journal of Occupational Therapy.
Previous research suggested that sleep disturbances, particularly night awakenings, are a problem for many patients with Sjogren’s syndrome.
So researchers explored how sleep problems affect the lives of patients and their partners. They also investigated the potential of cognitive behavioral therapy to improve patients’ sleep.
The study included 62 adults — 44 primary Sjogren’s syndrome patients, and 18 partners of patients. Patients were members of the United Kingdom Primary Sjogren’s Syndrome Registry (UKPSSR).
Participants were invited to participate in three focus groups to discuss the range of symptoms, their impact, and potential interventions. Sessions focused on six separate topics — sleep, fatigue, pain, depression, anxiety, and potential methods of delivering future therapy interventions.
In the end, 10 patients and three partners (two female and one male) attended the focus groups meetings.
All patients with primary Sjogren’s syndrome said they experienced sleep problems, including unrefreshing sleep, night awakenings, difficulty falling asleep, altered circadian rhythm, and nighttime pain and discomfort.
Specific disturbances varied between participants, primarily prolonged sleep onset time and frequent night awakenings, which were aggravated by pain and discomfort.
Patients had developed a series of strategies to help manage daytime sleepiness and fatigue. These included daytime naps, although “not everyone was able to sleep during the day despite a poor night’s sleep,” researchers wrote.
Other patients relied on prescribed sleeping pills, while others tried alternative medicines, including Chinese herbs, shiatsu, and acupuncture. Some patients tried relaxation or meditation techniques and others reported using a radio or television as a distraction to help them sleep.
Cognitive behavioral therapy for insomnia was generally regarded as an acceptable intervention, but patients said they need to understand the reasons behind the approaches, and these should be tailored for primary Sjogren’s syndrome.
One strategy included in cognitive behavioral therapy is called sleep restriction, which is the principle of “restricting time in bed and agreeing to retiring and wake-up times following the completion of a sleep diary,” researchers said.
While some patients were initially reluctant to try this therapy, after discussing it with their therapists, patients understood how the strategy aimed to regulate sleep and teach the body to associate time in bed with being asleep.
Overall, “applying tailored, evidence-based sleep therapy interventions may improve sleep, severity of other primary Sjogren’s syndrome symptoms and functional ability,” researchers wrote.