Multiprofessional follow‐up programmes are needed to address psychosocial, neurocognitive and educational issues in children with brain tumours

Abstract

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

Tools for the assessment of neuropsychomotor profile in the rehabilitation of children with central nervous system tumor: a systematic review

“…Finally, 35 articles (30 full text and 5 abstracts) reporting on pediatric oncologic rehabilitation ATs were selected. 15–49 Four systematic reviews were excluded. 50–53 A total of 26 of the 35 included articles were carried out in the neuro-oncology field.…”

Affected Aspects Regarding Literacy and Numeracy in Children Treated for Brain Tumors

“…A number of studies regarding academic achievements among children with cancer have shown that they need extra tutoring in school compared to their classmates or siblings (Barrera, Shaw, Speechley, Maunsell, & Pogany, 2005; Lorenzi et al, 2009; Mitby et al, 2003; Northman, Ross, Morris, & Tarquini, 2015; Upton & Eiser, 2006) and are need of other types of school interventions (Mulhern et al, 2004; van’t Hooft, Lindahl-Norberg, Björklund, Lönnerblad, & Strömberg, 2016). Children treated for brain tumors are at particular risk of experiencing difficulties with reading and mathematics compared to their classmates (Callu et al, 2009; Kieffer et al, 2012; Mabbott et al, 2005; Upton & Eiser, 2006) and often achieve lower grades in these subjects (Lähteenmäki et al, 2007).…”

Children with brain tumours need long‐term multidisciplinary psychosocial, neurocognitive, academic and rehabilitation follow‐up programmes

“…In this respect, the paper by van't Hooft et al. in this issue of Acta Pediatrica makes a significant contribution to the literature. The authors present, for the first time, the implementation and prospective evaluation of a model of care that combined the systematic medical, psychosocial, neurocognitive and pedagogical follow‐up of children and adolescents treated for brain tumours.…”

“…In this context, the study by van't Hooft et al. reported the implementation of a programme that combined the medical, psychosocial, neurocognitive and pedagogical follow‐up of children treated for brain tumours, describing those outcomes – which help to establish children's needs – and parental satisfaction with the programme. The programme, which was implemented in two different regions of Sweden, proved to be feasible, although it required some flexibility to adapt to local conditions and available resources.…”

“…The combined results of a systematic review and van't Hooft et al. 's study suggest that it could be feasible to start performing prospective research on the efficacy of multidisciplinary interventions. However, such studies will remain extremely challenging to implement, as they will probably need to be multicentre studies and to provide control or standard care interventions in order to remain ethically acceptable.…”