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ABSTRACT: OBJECTIVE: To investigate school absenteeism among childhood cancer survivors and their siblings and examine factors related to absenteeism in survivors. STUDY DESIGN: A cross-sectional study was conducted among consecutive cancer survivors attending a large pediatric cancer survivor clinic. Absenteeism rates were obtained for survivors and their closest in age sibling from school report cards. Absenteeism was compared with a population control group of 167 752 students using 1-sample t tests. The Child Vulnerability Scale, Pediatric Quality of Life Inventory, and Behavior Assessment System for Children were administered to survivors. Univariate and multiple regression analyses assessed variables associated with days absent. RESULTS: One hundred thirty-one survivors (median age at assessment: 13.4 years, range 8.0-19.2; median age at diagnosis: 9.4 years, range 4.3-17.3) and 77 siblings (median age at assessment: 13 years, age range 7-18) participated. Survivors and siblings missed significantly more school days than the population control group (mean ± SD: 9.6 ± 9.2 and 9.9 ± 9.8 vs 5.0 ± 5.6 days, respectively, P < .0001). Among matched survivor-sibling pairs (N = 77), there was no difference in absenteeism (9.6 ± 9.2 vs 9.9 ± 9.8 days, P = .85). Absenteeism in survivors was significantly associated with a low Pediatric Quality of Life Inventory Physical Health Summary Score (P = .01). Parents' perception of their child's vulnerability and emotional and social functioning were not associated with absenteeism. CONCLUSIONS: Childhood cancer survivors and siblings miss more school than the general population. The only predictor of absenteeism in survivors is poor physical quality of health. More research should be devoted to school attendance and other outcomes in siblings of childhood cancer survivors.
Journal of Pediatrics 01/2013; 162(1):160-5. · 4.11 Impact Factor
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ABSTRACT: Central nervous system germ cell tumors (CNS GCT) are typically localized to midline structures of the brain, including the pineal and suprasellar/pituitary regions. Management of these tumors depends on underlying histology (germinoma or nongerminomatous germ cell tumor). Knowledge about neurocognitive outcome in these patients is limited. Longitudinal neurocognitive outcome in CNS GCT patients seen for neuropsychological evaluation at a single institution was explored.
Thirty-five patients were seen for neurocognitive evaluation after diagnosis and treatment for a CNS GCT. Mean age at diagnosis was 11.66 years. Tumor location was suprasellar in 12 patients, pineal in 9, bifocal in 10, multifocal in 3, and thalamic in 1. Standardized cognitive tests of intelligence, receptive language, visual-motor ability, memory, and academic achievement were administered. Longitudinal and cross-sectional analyses were conducted.
Intelligence, academic functioning, and receptive vocabulary were not significantly compromised in most patients treated for CNS GCT. Working memory, information processing speed, and visual memory declined significantly over time in all patients. Patients with pineal tumors showed early and stable deficits, whereas patients with suprasellar and bifocal tumors showed more protracted declines from initial average functioning. Patients treated with ventricular versus craniospinal radiation displayed better outcome.
Although general cognitive abilities appeared stable and intact after treatment for most children with CNS GCT, a significant decline over time in working memory, processing speed, and visual memory was evident. Tumor location appeared to be important in understanding the trajectory of stability and decline in CNS GCT patients, as did radiation field.
Cancer 05/2011; 117(23):5402-11. · 4.77 Impact Factor
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ABSTRACT: Craniopharyngioma are rare histologically benign brain tumors that develop in the pituitary-hypothalamic area. They may invade nearby anatomical structures causing significant rates of neurological, neurocognitive, and endocrinological complications including remarkable hypothalamic damage. Information regarding long term implications of the tumors and treatment in the pediatric population is accumulating, and treatment goals appear to be changing accordingly. In this review we aim to present data regarding long term complications of craniopharyngioma in children and adolescents and our experience from a large tertiary center. Hypothalamic dysfunction was noted to be the most significant complication, adversely affecting quality of life in survivors. Obesity, fatigue, and sleep disorders are the most notable manifestations of this dysfunction, and treatment is extremely difficult. Changes in management in recent years show a potential for improved long term outcomes; we found a trend toward less aggressive surgical management and increasing use of adjuvant treatment, accompanied by a decrease in complication rates.
Frontiers in endocrinology. 01/2011; 2:81.
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ABSTRACT: We describe a theory-driven memory intervention programme for training individuals with moderate to severe memory impairment in the use of emerging commercial technology. Here we demonstrate the application of the programme to training MK, an 18-year-old woman with severe memory impairment following treatment for a suprasellar germinoma, to autonomously use a smartphone to support her day-to-day memory. A within-subject A(1)B(1)A(2)B(2) single-case experimental design was used to evaluate the impact of smartphone use on MK's real-life functioning. Following intervention MK showed increased confidence in dealing with memory-demanding situations and generalised smartphone use across all aspects of her life as quantified by several and varied ecologically valid measures including a phone call schedule, behaviour memory observations and questionnaires. Moreover the intervention also benefited her family as indicated by a sustained reduction in caregiver strain and an increase in reported quality of life. These findings suggest that individuals with severe memory impairment, particularly young adults with potentially life-long dependence on their families, are able to capitalise on emerging commercial technology to function more autonomously. The findings also suggest that the gap between individuals with severe memory impairment and potent emerging technology can be closed by provision of a theory-driven structured training programme.
Neuropsychological Rehabilitation 08/2010; 20(4):562-86. · 1.72 Impact Factor
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ABSTRACT: Intracystic bleomycin therapy has been proposed as a treatment for predominantly cystic craniopharyngioma. The risks of using this therapy, however, have not been clearly identified. The authors report on three children treated with intracystic bleomycin who developed initially mild symptoms during their course of therapy. They describe the neuroimaging findings from computed tomography (CT) scans and magnetic resonance (MR) images and the medical management of these three cases. Two patients in whom craniopharyngioma was recently diagnosed and one patient with recurrent craniopharyngioma were treated with a course of 3 mg of intracystic bleomycin three times a week for 5 weeks, followed by once every week for 10 weeks. All patients had a negative reservoir permeability test prior to beginning intracystic bleomycin therapy. Patients were asymptomatic or had mild symptoms at the time of neuroimaging. Magnetic resonance images revealed extensive vasogenic edema surrounding the cyst in all three patients, consistent with signs of bleomycin leakage. The edema occurred near the time of the 12th injection in two patients, and at the end of treatment in the remaining patient. Subsequently, two patients developed further symptoms suggestive of hypothalamic injury. These two patients received corticosteroids, leading to a rapid and sustained clinical improvement. Follow-up serial MR images showed a progressive regression of the surrounding edema. Neuroimaging documentation of bleomycin toxicity has been described mainly in adults experiencing severe toxicity. There was no correlation between clinical symptoms and the extent of edema in these three patients. An MR image provides a higher resolution than CT scans for evaluating the adjacent cerebral structures and is very sensitive in detecting early abnormalities, even in asymptomatic patients. Bleomycin therapy requires close clinical monitoring. Imaging evaluation should be performed using MR imaging during treatment to ensure the safety of the therapy. In the authors' experience, the toxicity to bleomycin was transient. Management of the toxicity using high-dose steroid administration appears to contribute to controlling the bleomycin-induced inflammatory process.
Journal of Neurosurgery 11/2007; 107(4 Suppl):318-23. · 2.96 Impact Factor
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ABSTRACT: To evaluate (1) the pattern of post-operative weight gain and (2) the risk factors associated with the development of post-operative weight gain and obesity in children treated for craniopharyngioma.
The records of 43 children who had primary craniopharyngioma resection were reviewed. Neurological, endocrine, anthropometric and radiological risk factors for the development of obesity and for post-operative increase in BMI SDS were analyzed.
Twenty-five patients (58%) became obese post-operatively. Obesity was significantly associated with higher BMI SDS at presentation and pre-operative hydrocephalus (p < 0.05). Increased BMI SDS from 0-12 months was significantly associated with post-operative MRI evidenced hypothalamic damage and higher BMI at presentation (p < 0.05).
Children who developed hypothalamic obesity had a significant, rapid BMI increase over the first 6 months, followed by stabilization, with no regression of BMI SDS.
Journal of pediatric endocrinology & metabolism: JPEM 02/2006; 19(2):121-7. · 0.88 Impact Factor
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ABSTRACT: Children with closed head injury (CHI) perform poorly on complex tasks requiring working memory (WM). It is unclear to what extent WM itself is compromised, and whether WM varies with factors related to the CHI, such as injury severity, age at injury, and time since injury. We studied verbal WM in 126 school-age children with CHI, divided into mild, moderate, and severe injury severity groups. WM distributions were significantly skewed toward lower scores in the moderate and severe groups, although the distribution in the mild group was normal. Age at injury and time since injury predicted WM components only for the moderate group. Survivors of moderate or severe childhood CHI have persisting WM deficits limiting the computational workspace required for many cognitive tasks.
Developmental Neuropsychology 02/2004; 25(1-2):21-36. · 2.56 Impact Factor
