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Sleep is extra important for children with cancer

Good sleep is important for your health and helps you to function well in everyday life. Everyone will recognize that you feel less fit after a bad night. For children with cancer, good sleep is even more important, because the symptoms of (severe) sleep deprivation are associated with problems they face more often. “If you sleep badly, this has many consequences,” says pediatrician-epidemiologist Dr. Raphaële van Litsenburg. “Apart from suffering from fatigue, it’s harder to concentrate. You are also less able to deal with emotions and can become anxious, for example.” Her PhD research was on sleep in children with ALL, discovered that twice as many of these children have sleep problems, and is now still studying sleep in children with cancer, including a new care path.
Raphaële van Litsenburg discovered during her PhD research in 2005 that many children with acute lymphatic leukemia (ALL) had sleep problems: “At that time little was known about sleep problems in pediatric oncology. That is why we started a sleep study among 138 families with a child diagnosed with ALL. The children had to wear an actigraph during and after the treatment. This is a kind of watch that measures movements and allows us to see when and how long children sleep. We also asked the parents to keep a sleep diary and fill in questionnaires.”

“This study shows that 38% of children with ALL have sleep problems; that’s twice as many as healthy children. We also see that sleep problems persist even one year after the treatment,” says Raphaële. Young children, teenagers and girls are at greater risk of sleep problems, as are children who are treated with dexamethasone, are physically less active, or have another chronic disease in addition to cancer. Parents of children with cancer also often suffer from insomnia. 3.5 years after their child’s diagnosis, 37% of parents still have sleep problems. This is more than twice as many as the general population. The majority of parents indicate that they feel stressed. Poor sleep and stress make it particularly difficult for parents to help their child develop healthy sleeping habits again.

“Sleeping in hospital is not conducive to a good night’s rest,” she continues. “On average, children are ‘disturbed’ 14 times a night by staff entering the room or alarms going off. The alarm of an infusion pump goes off five times a night on average, for a total of nine minutes. That is why we are conducting a study into silent infusion pumps, whose alarms are longer heard in the room, but only in the nurses’ office. At the Máxima there is also the possibility to put the drips outside the room. In addition, there is the DEXA days study led by Prof. van den Heuvel and Prof. Grootenhuis where children on dexamethasone are also given hydrocortisone (adrenocortical hormone) to establish whether this helps them sleep better. The so-called Suspect study looks into the relationship between sleep, stress and cognitive problems (such as impaired concentration or impaired memory). Teenagers and young adults struggling with insomnia can also participate in the MICADO study, which looks into the treatment of insomnia through an online course.”

New care path
More knowledge of sleep is important to prevent (serious) sleep problems. That is why information material on this subject is being developed for both parents and children. Raphaële van Litsenburg says, “In addition to the ongoing studies, a care path for sleep problems will be set up in the Máxima. In this way, we try to put into practice everything we have learned during our research. Anything to prevent sleep problems.”

Tips to treat sleep problems
  • Ensure a healthy sleeping pattern
  • Go to bed and get out of bed every day at about the same times
  • Exercise sufficiently during the day
  • Try to relax toward evening: no busy activities before bedtime
  • Avoid screens before bedtime
  • Establish a predictable evening ritual: then the body will know it is bedtime
More information: mail to R.R.L.vanLitsenburg@prinsesmaximacentrum.nl
This article was written jointly by Dr. Raphaële van Litsenburg, pediatrician-epidemiologist and Rosanneke Jongbloed, VOKK.