High-grade gliomas (HGG) are serious primary brain tumors that may prevent the patient from functioning normally in social, emotional and cognitive respect. Often the partner's role will convert to that of informal caregiver. Consequently, they may experience significant stress and reductions in caregiver mastery, negatively affecting their health-related quality of life (HRQOL). We aimed at (1) determining factors that impact HRQOL and mastery of caregivers of HGG patients, and (2) investigate if a structured intervention consisting of psychoeducation and cognitive behavioral therapy leads to improvements in the mental component of HRQOL and mastery of caregivers. Fifty-six patient-caregiver dyads were randomly assigned to the intervention group or the care as usual group. The intervention program consisted of six one-hour sessions with a psychologist. Participants completed questionnaires concerning their perceptions of the patients' HRQOL (SF-36), neurological functioning (BN20), and cognitive functioning (MOS), and concerning their own HRQOL (SF-36) and feelings of caregiver mastery (CMS) both at baseline (i.e. before randomization) and every 2 months thereafter until 8 months later, five times in total. Patients' HRQOL and neurological functioning were found to be related to HRQOL and feelings of mastery of the informal caregiver at baseline. The intervention helped caregivers in maintaining a stable level of HRQOL and improved feelings of mastery over an 8 month period. Our findings suggest that informal caregivers can benefit from a psychological intervention as it is a helpful tool in maintaining a stable level of mental functioning and caregiver mastery.

PurposeGlioma patients and their informal caregivers face many challenges in living with the disease and its disease-specific consequences. To better meet their needs, a system to monitor symptoms, distress, and quality of life could prove useful. We explored glioma patients’ and caregivers’ attitudes and preferences toward monitoring in general and specifically toward paper-and-pencil and computerized (eHealth) options.MethodsIn total, 15 patients and 15 informal caregivers participated in individual, semi-structured interviews. Interviews were transcribed smooth verbatim and coded by two researchers independently.ResultsAdvantages of monitoring generated by participants include increased awareness of problems and their flow over time, and facilitating supportive care provision. Disadvantages include investment of time and mastering the discipline to monitor frequently. Patients reported more disadvantages of monitoring, including practical and disease-specific impediments, while caregivers mentioned more advantages. Preferences for specific methods mentioned to monitor are highly personal but most prefer to have an option for face-to-face contact to discuss results of monitoring with health care professionals even in computerized instruments.ConclusionsInformal caregivers view a monitoring system more favorably than glioma patients. In developing an efficient monitoring system to help glioma patients and caregivers find their way to supportive care, a computerized instrument with the added opportunity to contact a health care professional seems to be the best option to advise.Electronic supplementary materialThe online version of this article (doi:10.1007/s00520-016-3112-7) contains supplementary material, which is available to authorized users.

The aim of this study was to evaluate cognitive functioning in newly-diagnosed glioblastoma multiforme (GBM) patients during treatment with radiotherapy (RT) plus concomitant and adjuvant temozolomide (TMZ). Cognitive assessment took place following surgery, but prior to the start of RT (baseline), after 6 weeks of RT and concomitant TMZ (1st follow-up), and after three cycles of adjuvant TMZ (2nd follow-up). Standardized cognitive summary measures and delta scores for six cognitive domains were calculated at the individual level. Cognitive functioning of progression-free GBM patients was compared to that of matched healthy controls. Analyses were performed on a group of 13 GBM patients that were progression-free during follow-up. The results showed that the majority of patients had deficits in multiple cognitive domains at baseline. Between baseline and 1st follow-up, four patients improved in one cognitive domain, four patients deteriorated in one domain, one patient improved in one domain and deteriorated in another, and four patients remained stable in all six domains. Between 1st and 2nd follow-up, the majority of patients (11) remained stable in all six cognitive domains, whereas one patient declined in one domain, and one patient showed a deterioration in two domains. Overall, between baseline and 2nd follow-up, three patients improved in one cognitive domain, two patients deteriorated in two domains, one patient improved in one domain and deteriorated in another, and seven patients remained stable in all six cognitive domains. In conclusion, preceding treatment, the majority of GBM patients show clear-cut deficits in cognitive functioning. In the course of the first 6 months of their disease, however, progression-free GBM patients undergoing radiotherapy plus concomitant and adjuvant temozolomide treatment do not deteriorate in cognitive functioning.

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-touse 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country-or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

INTRODUCTION: Recent trials have shown that the addition of procarbazine, lomustine, and vincristine (PCV) chemotherapy to radiotherapy (RT) improves survival in anaplastic oligodendroglioma. With improved survival, the quality of survival becomes pivotal. Because data regarding longterm functioning in anaplastic glioma patients are lacking, we evaluated cognitive functioning and health-related quality of life (HRQOL) in a cohort of Dutch and French long-term survivors from the European Organisation for Research and Treatment of Cancer (EORTC) trial 26951 on adjuvant PCV for anaplastic glioma. METHODS: Of the 28 Dutch patients and 9 French patients, 25 (89%) and 7 (78%), respectively, included in EORTC trial 26951 who were still alive agreed to participate. Cognitive functioning (assessed using neuropsychological tests for six cognitive domains) was compared with matched healthy controls. Patients' HRQOL (assessed with the EORTC QLQ-C30 and BN20 questionnaires) was compared with that of healthy controls, with the patients' own HRQOL 2.5 years following initial RT, and with the patient by proxy. Tumor histology, location, and recurrence; treatment; and the presence of epilepsy in the last year were recorded. RESULTS: The median survival time was 147 months. A total of 41% of patients did not have cognitive impairment, and 34% had severe impairment (≥ 4 domains affected). A total of 31% of patients were employed, 78% were independent in the activities of daily living. Patients' HRQOL was worse than controls' but was similar to 2.5 years after initial treatment. Treatment (in 35% of patients RT only, in 65% RT/PCV), histology and location were not correlated with cognition or HRQOL. Current epilepsy was associated with slower speed and poorer memory. Recent recurrence (13%) was associated with worse HRQOL. CONCLUSIONS: Cognitive functioning in longterm anaplastic glioma survivors is variable. However, most patients function independently. HRQOL is relatively stable during the course of the disease but is affected by recent recurrence. No effect of the addition of PCV to RT on cognition or on quality of survival could be identified in this patient group.

lower than that for both of these agents added sequentially. Interestingly, when the sequence of addition of drugs was reversed using 5azaD/SAHA, the reduction in growth (66% vs. 85%, P , 0.05) and percentage of apoptotic cells were lower than in cultures treated with SAHA/5azaD. The greatest amount of glioma cell death induced by SAHA/5azaD corresponded with higher protein levels of the cyclin dependent kinase inhibitor, P 21 , and the minimum fraction of cells in active phases of cell cycle (19% in control vs. 11% in SAHA/5azaD). Furthermore, glioma cells treated with SAHA/ 5azaD or 5azaD/SAHA displayed the highest levels of acetylated histone H4 protein levels, indicating possible epigenetic changes. Our data indicating that the effects of SAHA/5azaD are likely mediated by epigenetic mechanisms is made evident by increases in P 21 and acetylated histone H4 protein levels. Whether such strategies are also effective in primary human glioma tumor cells will be tested, which may ultimately open untapped territories to search for curative therapies.