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Mapping sleeping problems in children with cancer

Sleep problems and fatigue are common in children with cancer. But how often the problems occur and how serious they are is difficult to measure. Two researchers at the Prinses Máxima Center have been awarded their PhD for better measurement and description of sleeping problems in children during and after their treatment. Their research results will help improve monitoring and prevention of sleep problems.

Sleep is very important for development and daily functioning and has a huge impact on the quality of life of children with cancer. Sleep problems can be caused by the cancer itself, the treatment, and other factors such as stress or disturbances in the hospital environment.

The fact that sleep problems often occur in children with cancer is known, but in order to analyze them accurately, two PhD students in the Grootenhuis group first looked at the instruments - such as questionnaires - with which sleep and sleeping problems are measured, and at sleep in healthy children. For example, one of the researchers, Lindsay Steur, found that age and socioeconomic status are linked to differences in sleep in healthy children. These differences should be taken into account when looking at sleep in children with cancer.

Influence of nighttime disturbances
The focus of Jojanneke van Kooten's research was on the influence of environmental factors in the hospital, and the cognitive effects of sleeping problems in children with cancer. She found that both children and parents sleep worse while the child is hospitalized for chemotherapy. The alarms on infusion pumps, which the PhD student specifically looked at, had no direct influence on sleep - but her research shows that it is important to reduce nighttime disturbances, including noise, light and controls.

In addition to sleeping problems, children with a brain tumor are often at higher risk of a decline in their cognitive functioning. Van Kooten found a link between those two problems in these patients. It means that improving sleep could likely also improve cognition in children with a brain tumor. As well as good sleep monitoring, which is important in all children with cancer, it’s key to pay special attention to sleep in children with cognitive problems.

Sleep problems during and after treatment for ALL
About 140 children with ALL and their parents were questioned by Lindsay Steur about their experience of sleeping problems during and after treatment. She also measured sleep efficiency - the time that a child was awake after falling asleep, and how often the child was awake - and other aspects such as the sleep hormone melatonin. They were affected by sleep problems for up to three years after diagnosis.

Steur found that in addition to pain, issues with parents’ sleep and parenting, and sharing a bedroom were important factors in the sleep of patients with ALL. Children’s sleep-wake rhythm was also disrupted and this was associated with increased fatigue, both during the intense treatment after diagnosis and during maintenance treatment, where dexamethasone had a major effect.

From research to practice
Both researchers offer practical advice on the basis of the various factors revealed in their research. It is very important that sleep in children is properly monitored during and after treatment. Information for parents and children as well as for health care professionals about the positive effects of physical exercise and healthy ‘sleep hygiene’ is a first step toward improving sleep in children with cancer. With the results of the research, and with input from parents and children, further interventions can be developed in future to improve sleep and quality of life in childhood cancer.

Jojanneke van Kooten obtained her PhD on December 7, 2020; Lindsay Steur will receive her PhD on January 15, 2021. They were both supervised by Raphaële van Litsenburg and supervised by Martha Grootenhuis and Gertjan Kaspers.

Jojanneke van Kooten - "Improve the night, improve the day. Better sleep (measurement) in pediatric oncology" - https://www.gildeprint.nl/case/improve-the-night-improve-the-day/

Lindsay Steur - "Sleep in children with acute lymphoblastic leukemia" - https://www.gildeprint.nl/case/sleep-in-children-with-acute-lymphoblastic-leukemia/