Elevated IGF-1 concentrations in children with low grade glioma: A descriptive analysis in a retrospective national cohort.

Children with low grade glioma (LGG) may present with, or develop, elevated concentrations of insulin-like growth factor 1 (IGF-1). The prevalence, pathophysiology, or its possible clinical effects are poorly understood. Our aim was to evaluate the prevalence of such elevated IGF-1 concentrations and to describe its association with linear growth, body mass index (BMI), pituitary outcome, and tumor behavior in a large retrospective national cohort. From a nationwide retrospective cohort of pediatric brain tumor survivors diagnosed between 2002 and 2012, tumor, treatment, endocrine, and auxological data of children with LGG were collected (n = 358). Prevalence and risk factors for elevated IGF-1 concentrations, as well as the association between having elevated IGF-1 concentrations and receiving tumor treatment, were explored. IGF-1 concentrations had only been measured in 45.5% of cases (n = 163/358). In 18.4% of 163 children with available IGF-1 measurements, IGF-1 concentrations were found elevated. No association was described between having an elevated IGF-1 concentration and tumor behavior or height SDS at last moment of follow-up. Multivariate logistic regression identified posterior pituitary disorder (OR 6.14 95% CI: 2.21-17.09) and BMI SDS at follow-up (OR 1.56 95% CI: 1.09-2.20) to be significantly associated with elevated IGF-1 concentrations. In this retrospective cohort of children with LGG, IGF-1 was found elevated in 18.4% of children with available IGF-1 measurements. Elevated IGF-1 seems to be related to hypothalamic dysfunction worsening over time. Larger prospective cohort studies are needed.

Childhood brain tumor survivors at risk for impaired health-related quality of life.

This study aimed to assess health-related quality of life (HRQOL)-mean scores and percentages at risk for impaired HRQOL in childhood brain tumor survivors (CBTS) and to explore differences between CBTS treated with surgery only (SO) versus CBTS treated with surgery and adjuvant therapy (SA). HRQOL was evaluated in 34 CBTS (mean age=14.7 y; mean time since the end of treatment=6.4 y) with the KIDSCREEN. Being at risk for impaired HRQOL was defined as a T-score ≥1 SD below the norm population mean. The total and the SA group, but not the SO group, had significantly lower mean scores than the Dutch norm population in the domains of "physical well-being," "psychological well-being," and "peers and social support." High percentages (35% to 53%) of both the SO and the SA groups appeared to be at risk for impaired HRQOL in the domains of "physical well-being," "moods and emotions," "peers and social support," and "bullying," compared to 16% in the norm population. In conclusion, although HRQOL in some domains appeared similar to the norm population, a considerable number of CBTS-reported impaired HRQOL in several other domains. It is recommended to systematically monitor HRQOL in CBTS regardless of the therapy applied.

Explorative study on the aftercare of pediatric brain tumor survivors: a parents' perspective.

PURPOSE: Whilst the need for aftercare for long-term sequelae of brain tumor survivors is well known and evident, information from a parent's perspective is lacking on whether the need for aftercare is detected in time, and whether the aftercare is timely initiated and meets the needs for aftercare. METHODS: A survey regarding aftercare in five domains of long-term sequelae (neurocognitive, physical, emotional, social and parenting problems) was sent to 57 parents of survivors treated for a brain tumor in our center. RESULTS: Forty-two (74%) parents participated in this study. With a mean period of 8.1 years (SD = 3.9) since start of treatment, the majority of the survivors (mean age = 14.7 years, SD = 3.8) needed aftercare in several domains of functioning. This need was highest and most met for physical sequelae (N = 34), and lowest but still substantial and least met for parental difficulties (N = 11). Parents of survivors with surgery only as treatment reported a similar need for aftercare as those of survivors with adjuvant therapy. Most of the survivors received aftercare; however, substantial delay of aftercare and self-referral for aftercare were frequently reported. Furthermore, parents showed a lack of knowledge about and use of aftercare services. CONCLUSIONS: Increased awareness for the need for psychosocial aftercare is required. Coaching, psycho-educative programs about coping with the long-term sequelae and information about available specialized aftercare services are required to meet the needs of brain tumor survivors and their parents more adequately.