No abstract

The minimal annual incidence rate of neurodegenerative associated radiographic findings in LCH is estimated at 2.1/10(6) children (24% of all children with LCH). An important question is whether all patients with LCH, or certain forms of LCH, should be recommended for a late follow-up examination including MRI. In patients with CNS-LCH, neurological, neuropsychological, neurophysiological, neurochemical and neuroradiological follow-up assessment is suggested.

The immediate effect of the training programme improved complex attention and memory functions, indicating that this method may be a valuable treatment option for improving cognitive efficiency in children after ABI. On the basis of these results, the next step will be to evaluate long-term effects and further ecological validity.

BackgroundAs many as 95.7% of children diagnosed with a brain tumor will experience persistent late effects as adults. These include difficulties with general executive functions, lower IQ, and mental fatigue, which may negatively affect school performance.MethodsThrough the Swedish Childhood Cancer Registry, we identified 475 children born between 1988 and 1996, diagnosed with a brain tumor before their 15th birthday. School grades in “Swedish,” “mathematics,” and “English,” if their graduation was delayed, and qualification for school years 10‐12 were compared with 2197 matched controls. Furthermore, we checked for interaction effects between sex and age at diagnosis, and possible effects of tumor grade (high or low) as well as parents’ education.ResultsChildren treated for a brain tumor performed worse in the subjects compared to controls and also had delayed graduation to a greater extent. Fewer children treated for a brain tumor than controls qualified for school years 10‐12. Children treated at a young age, especially females, and children whose parents have low education seem to be at particular risk. Unexpectedly, there were no differences in outcomes between survivors with high‐ and low‐grade tumors.ConclusionsIt is important that schools provide regular pedagogical assessment and individualized support to meet the different needs of children treated for a brain tumor. Children treated for low‐grade tumors do not perform better than children treated for high‐grade tumors, despite the lighter treatment, and hence require the same attention and support.

II.

In a pilot study we examined the feasibility of a condensed version of the Swedish Memory and Attention Re-Training on children treated for medulloblastoma combined with a structured coaching programme for their parents. Parental coaching contained the translation of the child's new skills into daily life, and education regarding their own stress mechanisms. Before and after intervention we assessed the children's cognitive performance, social relations and self image as well as their parents stress. All three families continued the programme without interruption. Observations revealed that this condensed version of the programme was more stressful to participants. However, several aspects of the children's attention and memory performance improved from pre to post-training assessment. In addition, all of the children reported enhancement of their social relations and self image. Initially, symptoms of parental stress were pronounced for the three mothers, but fairly low for the fathers. After training and coaching, the stress level of both mothers and fathers was low. Our findings encourage full scale studies examining whether this combination of condensed cognitive training and specific coaching programme for parents may influence not only the children's cognitive performance but also their social relations, self image and their parents stress.

AimThe aim of this study was to coordinate the structured psychosocial, neurocognitive and educational follow‐up of children treated for brain tumours with the medical protocol and apply the model in two Swedish healthcare regions.MethodsWe invited all children living in the two regions, who had been diagnosed with a brain tumour from October 1, 2010, through June 30, 2012, to participate along with their parents. The follow‐up programme evaluated the emotional status of the parents and patients and assessed the children's general cognitive level, working memory, speed of performance, executive functions and academic achievement from diagnosis through to adult care.ResultsDuring the study period, 61 children up to the age of 17.1 years were diagnosed with a brain tumour, but 18 of these were excluded for various reasons. The majority of the mothers (70%) displayed significantly poor emotional status, as did 34% of the fathers and 21% of the children. The majority of the children (57%) also showed poor neurocognitive performance and needed special adaptations at school (66%).ConclusionOur findings indicate the need for coordinated, multiprofessional follow‐up programmes, well anchored in the healthcare organisation, for children diagnosed with brain tumours

The results indicate a specific, uneven neuropsychological profile in patients affected by CNS-LCH, with a decline particularly on perceptual tasks whereas the verbal performance was not as negatively influenced. Furthermore, verbal and visual-spatial working memory functions were below normal for age in all but one patient studied. LCH may easily be misdiagnosed, but it is important that individuals affected by CNS-LCH are diagnosed to provide advice and support. It remains a challenge to find a treatment reducing this unfortunate neurodegeneration.