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Sleep care path for all children with cancer

Sleep and fatigue problems are common in children with cancer. Sometimes as a result of the disease or circumstances, sometimes as a result of treatment or surgery for a brain tumor, for example. Sleep problems have a detrimental effect on physical and mental health. Therefore, specialized child sleep care for highly complex sleep problems is offered and a child somnologist (child sleep expert) holds monthly consultations at the Máxima Center.
Dr. Raphaële van Litsenburg, trainee paediatric oncologist specializing in sleep, has drawn up a sleep care pathway. Raphaële: 'A care path includes several steps. First of all, it is important that the healthcare provider pays attention to sleep and recognizes problems in time. If a child suffers from insomnia or a shifted rhythm, we can treat it by optimizing the sleeping conditions and sometimes by prescribing medication. If this has insufficient effect, we discuss the situation in a multidisciplinary consultation. Doctors, psychologists and nursing specialists discuss the sleep problem. If there are highly complex sleep problems, a consultation with the child somnologist can be requested. I am convinced that the sleep care path leads to a better quality of life for the child and the parents.

Consultation hours

From mid-July, a child sleep specialist from SEIN, the epilepsy and sleep medicine expertise center, will provide consultations at the Princess Máxima Center once a month. Sometimes it is unclear where exactly the sleep problems come from, making it difficult to start an appropriate treatment. This may be because there are many things going on at once, but also because there are physical problems involved. Such as a disturbance of breathing at night, misunderstood nocturnal restlessness or excessive daytime sleepiness, which require special evaluation and treatment. Pediatric neurologist and somnologist Dr. Sigrid Pillen: 'I am present at the multidisciplinary meetings where children with sleep problems in the Máxima Center are discussed. I can often give extra advice there, which allows the therapists to move forward. Most sleep studies, such as actigraphy and melatonin measurements, are also conducted from the Máxima Center. I help with the interpretation of the results. If it turns out to be more complex or extensive sleep research is required, such as a polysomnography, then I see children and their parents at the Máxima Center for a second opinion. We have arranged for most sleep studies to take place at home, to keep the burden for children and parents as low as possible.

Collaboration

The Prinses Máxima Center and SEIN have entered into a collaborative agreement until 2025 to improve the prevention and treatment of sleep problems in children with cancer. The paediatric somnologist will also be responsible for the education and additional training of healthcare professionals at the Máxima Center in the field of sleep.