Long-term health and social function in adult survivors of paediatric astrocytoma: A report from the Childhood Cancer Survivor Study.

BACKGROUND: Although paediatric astrocytoma has an excellent 5-year survival rate, survivors remain at risk for morbidity and late mortality. This study aimed to estimate the risk of late mortality, chronic conditions, poor health status and social impairment in ageing paediatric astrocytoma survivors. METHODS: We longitudinally evaluated 1182 5-year astrocytoma survivors diagnosed between 1970 and 1986 and 4023 siblings enrolled in a retrospective cohort study. Kaplan-Meier estimates of late mortality and cumulative incidence of serious chronic conditions were estimated. Cox regression models provided hazard ratios (HRs) with 95% confidence intervals (CIs) for development of chronic conditions, and generalised linear models provided relative risks (RRs) of the poor health status and social outcomes. RESULTS: At 30 years from diagnosis, cumulative late mortality was 22.1% (CI 20.0-24.3%), primarily due to disease progression or recurrence. Compared with siblings, survivors were at increased risk of serious chronic conditions (HR 4.6, CI 3.8-5.5). Survivors reported higher rates of poor general health (RR 3.3, CI 2.8-3.8), poor mental health (RR 1.9, CI 1.7-2.1), functional impairment (RR 9.0, CI 7.7-10.5) and activity limitation (RR 3.6, CI 3.1-4.2) and lower rates of college graduation (RR 0.75, CI 0.69-0.82), marriage (RR 0.62, CI 0.58-0.66), employment (RR 0.75, CI 0.72-0.79) and household income ≥$40,000 (RR 0.68, CI 0.64-0.73). Even survivors without radiation exposure had elevated risk of chronic conditions, poor health status and social impairment compared with siblings. CONCLUSIONS: Survivors of paediatric astrocytoma are at high risk for long-term complications of their disease and its treatment. They require lifelong monitoring for late effects.

Assessment of Cognitive, Emotional, and Motor Domains in Patients with Diffuse Gliomas Using the National Institutes of Health Toolbox Battery.

OBJECTIVE: Patients with brain tumors are known to have deficits in cognitive, motor, and emotional domains. Comprehensive evaluation of the patient with brain tumor includes taking into account all these domains at baseline and throughout treatment. Standard neuropsychological assessment methods, however, are lengthy, expensive, and often are variable. The authors appraised the feasibility of using a brief, inexpensive, comprehensive, and standardized neuropsychological battery, the National Institutes of Health (NIH) Toolbox, to assess these domains in patients with diffuse glioma. METHODS: Eighteen patients were recruited and completed the NIH Toolbox Cognitive Battery, 2 motor tests (Grip Strength and Grooved Pegboard), and the NIH Toolbox Emotional Battery. Fully corrected T scores are reported, as well as composite scores of fluid and crystallized cognition. Follow-up cognitive (n = 13) and motor assessment (n = 12) were performed at 1 month after surgery. RESULTS: The total time to complete the battery was approximately 60 minutes. A total of 78% of patients demonstrated significant impairment on one or more cognitive test, whereas 37% had impaired fluid cognition. Crystallized and overall composite cognitive scores were relatively intact, with 16% of patients showing significant impairment. A total of 22% of patients had impaired strength in the left hand, and 22% had impaired dexterity in both hands. In addition, 50% of patients showed impairment in one or more emotional domain. At 1 month after surgery, a significant decrease in crystallized cognition was observed. CONCLUSIONS: The NIH Toolbox represents a feasible alternative to current neuropsychological batteries in the assessment of neurosurgical patients. It can be administered quickly, inexpensively, and will give the neurosurgical community a common currency when reporting neuropsychological results.

The burden of subependymal giant cell astrocytomas associated with tuberous sclerosis complex: results of a patient and caregiver survey.

Tuberous sclerosis complex is a genetic disorder characterized by benign tumor growth including lesions in the ventricular system of the brain known as subependymal giant cell astrocytomas. This analysis focuses on the clinical presentation, management, and associated burden of subependymal giant cell astrocytomas in patients with tuberous sclerosis complex in the United States. An institutional review board-approved web-based survey of tuberous sclerosis complex patients and caregivers collected information, and descriptive analyses were conducted on age-based subgroups. A total of 116 tuberous sclerosis complex-subependymal giant cell astrocytoma patients or caregivers responded (17% of the total tuberous sclerosis complex sample). Mean and median patient ages were 25.5 and 23.5 years. Besides subependymal giant cell astrocytomas, patients also experienced skin lesions (72%), seizures (65%), and cognitive concerns (60%). Forty-five percent reported having brain surgery (22% for subependymal giant cell astrocytoma). In the past year, 42% of patients were admitted at least once to the hospital whereas 39% went to the emergency department. Results demonstrate that tuberous sclerosis complex-subependymal giant cell astrocytoma is associated with significant clinical burden, resource utilization, and decreased well-being.

Awareness of psychological and relationship problems amongst brain tumour patients and its association with carer distress.

OBJECTIVE: The aim of this research was to investigate if brain tumour patients underestimate the severity of their impairments and the impact of this behaviour on carer distress . This study also aimed to identify the support services that patients and carers experiencing distress would find most beneficial. METHOD: A total of 32 post-surgery brain tumour patients, their carers, and a control group of 29 patients following surgery to extra-cerebral areas and their carers were recruited from outpatient clinics. Patients and carers rated the patient's psychological well-being and the impact of a range of changes since diagnosis/surgery. Patients and carers also rated their own level of distress and the support services they would find most beneficial. RESULTS: When compared with the control group, brain tumour patients were more likely to underestimate their psychological problems (p < 0.005) and the negative impact of changes to their emotional function (p < 0.05), interpersonal relationships (p < 0.05), cognition (p < 0.05) and coping skills (p<0.05). A multiple regression analysis showed that underestimation of psychological and interpersonal problems by brain tumour patients explained 35% of the variance in their carer's anxiety. CONCLUSION: The finding of reduced awareness or denial in brain tumour patients and its contribution to increased carer anxiety highlights the need for therapeutic interventions, which improve patient insight/denial and encourage patient and carer communication.

[Beneficial outcomes of an interdisciplinary psychoeducative group intervention for patients with malignant gliomas and their relatives]. / Interdisziplinäre Psychoedukation für Hirntumorpatienten und deren Angehörige.

BACKGROUND: To assess the impact of psychoeducative group interventions on patients with high-grade glioma (glioblastoma, mixed glioma, and astrocytoma) and their relatives. METHODS: A total of one hundred and four patients and relatives underwent group interventions between September 2007 and May 2010 and were coached by a psychologist and a physician in the context of an interdisciplinary meeting. Questionnaires were distributed after every meeting. RESULTS: In general, group interventions were experienced as helpful to discuss psychic aspects, new life circumstances, and medical questions. CONCLUSIONS: Psychoeducative group interventions represent an important support for brain tumor patients and their relatives for discussing anxiety, concerns, and needs and thus improve their quality of life.

Predictors of employment and lost hours from work in cancer caregivers.

This cross-sectional, descriptive study identified variables associated with caregivers who (1) were employed and (2) reported lost hours from work due to care demands. Family caregivers (N=80) of persons with a primary malignant brain tumor participated in a 45-60 min telephone interview, answering questions regarding the impact of providing care on their emotional health and employment status. Younger caregivers were more likely to be employed. Caregivers were more likely to report lost hours from work when care recipients required assistance with Instrumental Activities of Daily Living (IADLs) and were closer to the time of diagnosis. Data suggest that interventions to assist caregivers in maintaining employment should target caregivers of persons with limitations in physical function and should include strategies to coordinate care to assist with IADLs.

I could lose everything: understanding the cost of a brain tumor.

Although studies have quantified the costs of cancer treatment, few have evaluated the widespread impact of cancer costs on the family unit. Specifically, little is known regarding how cancer affects patients and their families financially, and how they cope with these costs. The purpose of this descriptive study was to explore the financial impact of cancer care in neuro-oncology. Content analysis was used to examine data from interviews with 20 adults receiving treatment for a primary malignant brain tumor. Participants were recruited from across the United States through an advertisement in a national support group newsletter. Four major themes were identified -"paying for medication/healthcare", "strategies to offset costs", "impact of cancer costs", and "fear/uncertainty". Within the major themes several sub-themes were also recognized. In the theme of paying for medication/healthcare, participants emphasized sub-themes such as frustrations over "not qualifying/red tape" and being "thankful" for what was covered. Some of the strategies used to offset cancer costs included "cashing in" and relying on "family/friends" for financial support. When describing the impact of cancer costs, participants mentioned sub-themes including the "cost to their family", the "cost of their disability", and the impact of a "change in income/job". Results elucidate the financial concerns and coping strategies of persons undergoing treatment for cancer. These data help target patients' support needs during treatment, such as providing for their family and navigating their insurance policies, and suggest more efficient implementation of financial interventions are needed to alleviate the emotional burden of cancer costs.

Psychometric- and quality-of-life assessment in long-term glioblastoma survivors.

BACKGROUND: Multimodal treatment of patients with glioblastoma multiforme (GBM) allows an increasing number of patients to survive beyond one year. On account of various neurological and psychophysiological impairments, however, these patients may not benefit in terms of quality of life (QOL). We evaluated the subjective QOL, clinical psychophysiological and cognitive functions in patients with GBM surviving 18 months after diagnosis. PATIENTS AND METHODS: Thirteen patients underwent psychophysiological and psychometric measurements for central-nervous activation, habituation of skin-conductance reaction, crystallized intelligence, verbal and psychovisual memory. QOL was assessed by the symptom check-list for somatization (SCS-Score). RESULTS: We found various impairments such as central-nervous deactivation (n = 9) or high activation (n = 3), psychovegetative overexcitement (n = 3) or attenuation (n = 1), reduced verbal (n = 5) and/or psychovisual (n = 5) memory and loss in attention (n = 7) or concentration (n = 5). Severe physical symptoms (grade 5) were fatigue, convulsion, headache, nausea and micturition difficulties. Eleven patients expressed high satisfaction with life in general, whereas only 4 were satisfied with their general state of health. All patients were independent and 8 patients returned to work. CONCLUSION: Despite various psychophysiological and cognitive impairments, subjective QOL appears mostly unaffected in this patient setting.

Prospective study of neuropsychologic testing and quality-of-life assessment of adults with primary malignant brain tumors.

PURPOSE: To identify the characteristics of adult patients with newly diagnosed primary brain tumors associated with identifiable deficits in neuropsychologic function to target interventions to improve function and quality of life (QOL). MATERIALS AND METHODS: Adult patients with newly diagnosed primary brain tumors and their caregivers were enrolled and underwent a battery of standardized neuropsychologic tests, allowing for qualitative and quantitative assessment and sensitive to the effects of the brain tumor, QOL, or caregiver stress. RESULTS: We enrolled 68 patients with no prior radiotherapy. Patients with left hemisphere tumors reported significantly more memory problems and depressive symptoms. They also exhibited poorer attention and were more distractible, with poorer verbal fluency and poorer verbal learning. Patients with glioblastoma multiforme demonstrated poorer psychomotor speed and visual tracking than patients with non-glioblastoma multiforme histologic features. Patients and caregivers perceived QOL in a similar fashion, with significant correlation between patient and caregiver on hope testing and general QOL on the Linear Analog Self-Assessment Scale. CONCLUSIONS: Patients with left hemisphere tumors and glioblastoma multiforme histologic features demonstrated testable differences in neuropsychologic function and QOL that may be amenable to improvement with medical therapy or tailored rehabilitation programs. Caregiver assessments can predict patient QOL, which may be useful in patients with declining status.

Acute effects on neuropsychological function and quality of life by high-dose multiple daily fractionated radiotherapy for malignant astrocytomas: assessing the tolerability of a new radiotherapy regimen.

Cognitive and other quality of life measures were assessed in 29 patients with supratentorial malignant astrocytomas before and after high-dose (8000 cGy) multiple daily fractionated radiotherapy. Assessments were done immediately before and after radiotherapy. Patients completed a neuropsychological evaluation and the Functional Living Index: Cancer (FLIC). Spouses completed the Family Environment Scale and the Profile of Mood States. Cognitive abilities generally improved over the course of radiotherapy. Occasionally, deterioration of potential clinical importance was observed on functions associated with the tumour site. Quality of life as assessed by the FLIC was stable in most cases and improved in five, but deteriorated in three patients. Families showed slightly less Conflict and slightly more Cohesion than the norm; this was especially so when patients had greater cognitive deficit. Emotional state of spouses was variable, with increased fatigue or reduced activity most commonly reported, followed by depression and anxiety. Mostly this improved with time or remained stable, but two spouses reported worsening emotional state. Results are generally encouraging for tolerance of this radiotherapy protocol, although they demonstrate that limited adverse effects may occur in some cases.

Assessment of quality of life in patients treated for low-grade glioma: a preliminary report.

In this pilot study quality of life was assessed in fourteen adult patients who were treated for a low-grade glioma with surgery and radiotherapy at least one year previously. Apart from widely used parameters, such as the neurological and functional status, the patients' cognitive functioning and actual affective status were determined. In addition the patients were interviewed to evaluate various aspects of quality of life. Generally no serious focal neurological deficits were found, although psychological examination showed serious cognitive and affective disturbances in most cases. Self report measures concerning cognitive functioning were not in all cases in accordance with objective test results. When the results of treatment in glioma patients are evaluated assessment of quality of life, including neuropsychological functioning, should be performed, especially as new therapeutic strategies are being developed.

Assessment of quality of survival in children with medulloblastoma and cerebellar astrocytoma.

To determine the quality of survival for children with posterior fossa tumors, comprehensive neuropsychological, behavioral, and academic assessment and physician ratings of functional status were obtained on 15 brain tumor patients (ages 6-19 years) at a median of 20 months post-diagnosis. More than 50% of the children (whether irradiated or not) experienced major problems in academic, motor, sensory, cognitive, and emotional function. All but two children were reported by teachers to be "slow workers," and four of 15 patients were able to maintain their school work in regular classes. Although 80% of the patients were rated by physicians as having "excellent" or "good" functional status, no relationship was found between these global ratings and psychometric measures. Although the affected site was the posterior fossa, deficits also involved higher cortical function. These findings indicate the need for further evaluation of treatment effects and the provision of intervention for survivors.