A year and a half ago, the Sleep Care Path was established. It is a series of steps to analyze and treat sleep problems in children with cancer. The pediatric oncologist, psychologist or nurse practitioner identifies, counsels and monitors the outcome of sleep problems. Once a month, there is a multidisciplinary consultation with Sigrid Pillen, pediatric neurologist and somnologist (sleep expert) at SEIN, where colleagues can bring a complicated case and/or refer children with sleep disorders. Sigrid Pillen: ‘Sleep problems often involve an interaction between psychological and medical causes. It is related to stress management and maintaining healthy sleep for everyone, both children and parents. More than half of the children with cancer have (temporary) sleep problems, but in about 18% of the children it is severe enough to be considered a sleep disorder.’
Outpatient clinic for sleep
‘These are often children with complex problems, such as brain tumors, which also damage the brain's sleep systems,’ says Sigrid Pillen. ‘But also children with other oncological diseases, where the origin of the sleep problems is not clear, with misunderstood daytime fatigue, or where one gets stuck in the treatment, visit the sleep clinic. I help them to find out where the underlying problem is, sometimes with additional sleep studies, and then refer them to the right care in the region to continue treatment. I find that children and parents are very happy with this attention to sleep, because it usually gets lost in the shuffle of all the other problems, but it has a tremendous impact on daily life.’
Better quality of life
Pediatric oncologist Lisethe Meijer says: ‘Sleep problems can result from the location of the tumor, from underlying syndromes, or from non-congenital brain damage and/or overstimulation, which we see in many children with brain tumors. Sleep problems affect the child's quality of life and ability to function in daily life. But the child's sleep problems also affect the quality of family life and sometimes the interaction between child and parents, resulting in reduced parental capacity. Since the establishment of the Máxima Sleep Care Path and the expertise of Sigrid Pillen and Raphaële van Litsenburg, coordinator of the Sleep Care Path, we have been able to offer many families insights and solutions that previously seemed unavailable. This is a great improvement in our care and a better quality of life for many children and parents.’