Multiprofessional follow-up programmes are needed to address psychosocial, neurocognitive and educational issues in children with brain tumours.
OBJECTIVE
The 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.


METHODS
We 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.


RESULTS
During 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%).


CONCLUSIONS
Our findings indicate the need for coordinated, multiprofessional follow-up programmes, well anchored in the healthcare organisation, for children diagnosed with brain tumours.
Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.|Neuropaediatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
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Van't Hooft
Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.|Clinical Psychology in Health Care, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
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Lindahl Norberg
Uppsala University Children's Hospital, Uppsala, Sweden.
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Björklund
Neuropaediatric Unit, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.|National Agency for Special Needs Education and Schools, Stockholm, Sweden.
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Lönnerblad
Uppsala University Children's Hospital, Uppsala, Sweden.|Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
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Strömberg
D000293:Adolescent; D001932:Brain Neoplasms / Q000523:psychology / Q000534:rehabilitation*; D002648:Child; D002675:Child, Preschool; D003071:Cognition; D004521:Educational Measurement; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents / Q000523:psychology; D011446:Prospective Studies
Multiprofessional care; Neurocognitive performance; Paediatric brain tumours; Poor emotional status; Special needs