Itching at night tied to sleep problems for Alagille kids – and their caregivers
Researchers call for new, specific interventions to help families get better rest
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Due to itching at nighttime, children with Alagille syndrome often experience substantial problems getting a good night’s sleep, leading to poor rest not only for these youngsters but for their caregivers, a new study suggests.
More severe itching at night appeared to be tied to worse sleep, the researchers noted, though the team stressed that the small number of children covered in their analysis prevents any broad conclusions.
Still, “correlation analyses revealed that several child sleep disturbances, including night wakings, daytime sleepiness, sleep-related anxiety, and [abnormal breathing habits], were associated with poorer caregiver sleep, underscoring interconnected sleep disruption within families” affected by Alagille, the researchers wrote.
Overall, according to the team, “the chronic nature of [nighttime itching] … imposes a psychosocial and emotional burden on caregivers, adversely affecting overall family well-being.”
The team added that “these findings underscore the need for integrated management strategies” to help Alagille children affected by itching, called pruritus, and their family members.
“Future work should incorporate objective sleep measures, longitudinal assessment of pruritus and treatment responses to develop [Alagille syndrome]-specific sleep interventions,” the researchers wrote.
The study, “Impacts of Alagille syndrome on sleep of patients and their caregivers,” was published in the journal Sleep Medicine by a team of scientists in Brazil.
Alagille is a genetic disorder that can cause abnormalities in the development of several organs, including the liver. People with Alagille commonly experience cholestasis, which refers to the stalled flow of bile, a digestive substance normally made in the liver and then shipped out to the intestines.
When this flow is stalled, bile builds up to toxic levels in the liver, causing damage, and leaks into the bloodstream. This, in turn, can lead to symptoms such as itching, known as cholestatic pruritus.
Itching in Alagille can have wide-ranging impacts on life quality, including making it difficult to sleep. And when a child isn’t sleeping well, parents and caregivers are often affected, too, the researchers noted.
Investigating effects of nighttime itching on children with Alagille
Now, a team of scientists, mostly from the Universidade Federal de São Paulo, conducted a survey to better understand how Alagille affects sleep quality for children with the condition and their caregivers.
The study involved 13 children with Alagille — about 70% of them boys, with a mean age of 5.3 years — and their mothers, who had a mean age of 39.1. Also surveyed were 13 sex- and age-matched typically-developing children and their caregivers. Nearly all of these caregivers (92%) were also women, and these participants had a mean age of 35.8.
All of the caregivers completed a pair of standardized parent-reported questionnaires assessing childhood sleep quality. They also completed a self-reported questionnaire to rate their own sleep quality.
“A novel contribution of this study is the systematic evaluation of sleep quality among caregivers, a dimension largely overlooked in the ALGS [Alagille syndrome] literature,” the researchers wrote.
Results of the child questionnaires indicated that children with Alagille generally had significantly worse sleep quality than their typically developing peers. Specifically, kids with Alagille woke up significantly more often during the night, had a significantly shorter sleep duration, and were significantly more likely to experience parasomnias — a broad category of sleep disorders that includes sleepwalking, acting out dreams, and sleep terrors.
Alagille patients also had more pronounced problems with falling asleep, maintaining sleep, and sleep-wake transitions.
Our analysis underscores the profound impact of cholestasis on sleep and suggests that the sleep [profile] in [Alagille syndrome] is broader than previously recognized.
Children with Alagille who had worse sleep tended to have more severe itching. While the team cautioned against drawing broad conclusions based on this study, given the small number of patients, the researchers said these data are in line with findings from prior studies suggesting that discomfort due to cholestatic pruritus is the main driver of sleep problems in Alagille.
“Our analysis underscores the profound impact of cholestasis on sleep and suggests that the sleep [profile] in ALGS is broader than previously recognized,” the researchers wrote, adding that, “despite prior documentation of pruritus-related sleep impairment, few studies have examined alterations in specific domains such as parasomnias or sleep-wake transition disturbances both of which were markedly disrupted in our [patient group].”
The team called for more research to better understand these specific types of disturbances in Alagille patients.
Worse sleep quality reported by moms of Alagille kids
Mothers of children with Alagille reported significantly worse sleep quality relative to caregivers of typically-developing kids, the researchers also noted.
In exploratory statistical analyses, the researchers highlighted several associations between sleep disturbances in Alagille children and poor sleep for their moms. For example, poorer sleep quality and a longer time to fall asleep were generally reported by caregivers of children who frequently woke up in the middle of the night and those experiencing excessive daytime sleepiness.
“We observed significant correlations between child sleep disturbances and caregiver sleep metrics,” the researchers wrote. “These findings highlight a [two-directional] interplay whereby the child’s nocturnal symptoms impair caregiver sleep, which may, in turn, compromise the caregiver’s ability to maintain consistent routines and structure the child’s sleep environment.”
According to the team, these findings highlight a need for further work to provide itching control and additional support for families impacted by Alagille to help everyone in the home get enough rest.
