A scoping review of cognition in spina bifida and its consequences for activity and participation throughout life.

AIM: The aim of this scoping review was to summarise findings concerning cognitive characteristics in people with spina bifida and explain how cognitive factors influence activities and participation in different areas and stages of life. METHODS: PubMed, Psych INFO, ERIC, Scopus, CINAHL and the Cochrane Library were searched for English language papers published in 2000-2018. A total of 92 papers were selected and quality was assessed according to the McMaster criteria. The results were presented related to body functions, activity and participation from the International Classification of Function and Health, ICF. RESULTS: People with spina bifida tended to have a lower IQ than those without. The majority also had cognitive difficulties manifested in problems with language, perception, memory, executive and attentional functions. Those difficulties affected activity and participation in all life domains in ICF. This may affect medical adherence and responsibility and by extension the prevention of secondary complications. CONCLUSION: It is important for caregivers, professionals and especially individuals with spina bifida themselves to understand and handle both physical and cognitive consequences in all life circumstances. Having insight into one's own assets and difficulties paves the way to managing life challenges, which could enhance health, self-management and participation in society.

Cognitive, language, and school performance in children and young adults treated for low-grade astrocytoma in the posterior fossa in childhood.

BACKGROUND: Pilocytic astrocytoma is the most common brain tumour type in childhood located in the posterior fossa, and treated mainly with surgery. These tumours have low mortality, but knowledge concerning its long-term outcome is sparse. AIM: The aim of this study was to investigate whether children treated for pilocytic astrocytoma in the posterior fossa had late complications affecting cognition, language and learning. METHODS: This descriptive single-centre study includes eight children and 12 adults treated as children for pilocytic astrocytoma in the posterior fossa, with a mean follow-up time of 12.4 (range 5-19) years. Well-established tests of intelligence, executive, language and academic function were used. RESULTS: Intelligence tests showed average results compared with norms. Five patients scored <-1 SD (70-84) and 3 low average (85-92) on full scale IQ. The patients scored average on subtests regarding executive function, except for significantly lower results in inhibition/switching (p = .004). In Rey complex figure test half of the patients scored below -1 SD. Language tests were normal except for significantly lower results in naming ability (p = .049) and in inference (p = .046). In academic tests, results were average, except for significantly lower results in reading speed (p = .024). Patients with learning difficulties performed worse in the tests. CONCLUSIONS: The patients' functional outcome was favourable but, a not-negligible part of the patients displayed neurocognitive difficulties as revealed by extensive neuro-cognitive and academic testing. Thus, it is important to identify those in need of more thorough cognitive and pedagogic follow-up programmes, including school interventions.

Clinical characteristics, long-term complications and health-related quality of life (HRQoL) in children and young adults treated for low-grade astrocytoma in the posterior fossa in childhood.

INTRODUCTION: Pilocytic astrocytoma is the most common brain tumour in childhood but knowledge concerning its long-term outcome is sparse. The aim of the study was to investigate if children treated for low-grade pilocytic astrocytoma in the posterior fossa had complications affecting physical and psychological health, cognitive functions, learning difficulties and HRQoL. METHODS: A descriptive single-centre study, where 22 children and young adults out of 27 eligible patients (81%) treated for pilocytic astrocytoma, with a mean follow-up time of 12.4 years (5-19 years) participated (14 adults, two by telephone interviews and eight children). The study included a review of medical records, an interview, neurological investigation, screening tools for psychiatric symptoms (Beck Depression and Anxiety Inventories and Beck Youth Inventory Scales) and HRQoL measures (RAND-36). RESULTS: Motor complications were most common, reported in 12 patients and mainly affecting fine-motor skills. Seven patients reported cognitive difficulties affecting performance in school. Educational support was given in the period immediately after treatment but not after primary school. None had elevated levels of psychiatric symptoms and the level of HRQoL as well as their psychosocial and educational situation was in correspondence with Swedish norms. The HRQoL score for vitality (VT) almost reached statistical significance. CONCLUSIONS: The long-term functional outcome for children treated for low-grade astrocytoma is favourable. However, some patients report neurological complications and learning difficulties, which are unmet in school. Therefore, there is a need to identify those who need more thorough medical and cognitive follow-up programmes including interventions in school.