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OBJECTIVE Describe the most common and challenging issues facing caregivers of patients with newly diagnosed gliomas. BACKGROUND Despite growing evidence that caregivers of brain cancer patients have high burden, there are no studies on what specific aspects of caregiving are most challenging. Understanding these specifics can inform better approaches to support them. METHODS Prospective study of caregivers of patients with newly diagnosed gliomas (glioblastomas, anaplastic astrocytomas, and low-grade gliomas). Caregivers (n=57 at baseline) used free-text fields to report the most challenging aspects of caregiving at baseline, 3 months, 6 months, and 12 months after diagnosis. Responses were grouped into categories for analyses and examined utilizing the Model to Guide Patient and Family Care. RESULTS Caregiver participants included spouses (n=34), children (n=12), and others (n=11) and the majority of tumors were high-grade gliomas. The most common challenges at each time point were coping with diagnosis and associated mortality and uncertainty (32% at baseline), providing hands-on care (27% at 3 months), dealing with the patient’s emotions (33% at 6 months), and providing hands-on care, witnessing cognitive/behavioral changes, and seeing physical deficits (each 30% at 12 months). Psychological challenges such as dealing with emotions, coping with the diagnosis, or witnessing cognitive/behavioral changes were common across all time points. Social challenges such as communication difficulties and shifting relationships and family dynamics were less common. At baseline, coping with the new diagnosis was most challenging for caregivers, whereas at 12-months, the patients’ cognitive, behavioral, emotional, and physical difficulties became more pronounced resulting in the need for more hands-on care. The data was limited by dropouts, particularly at 12-months(n=20). CONCLUSION Caregivers of glioma patients experience challenges that evolve in the 12 months following diagnosis. These results provide a starting point to better screen caregivers for distress and develop targeted interventions to improve caregivers’ quality of life.

Background/aim Whether adding tumor treating fields (TTF) to the Stupp protocol increases survival for glioblastoma (GBM) patients in routine clinical care remains unknown. Patients and methods We retrospectively identified adult patients with newly diagnosed GBM (n=104) treated with the Stupp protocol or TTF at our Institution. Results Thirty-six percent (37/104) of patients received TTF in conjunction with the Stupp protocol and these patients had increased 6-month (p=0.006) and 1-year (p=0.170), but not 2-year survival rates compared to the 67-patients who received Stupp alone. The improvement of survival rate at 6-month was further confirmed by a modified Poisson model (p=0.010). However, we did not observe any improvement in overall survival (OS) with a Cox model. Conclusion While adding TTF to the Stupp protocol appeared to benefit patients with newly diagnosed GBM, this effect was mild and may be largely due to selection bias.

Chemotherapy-induced peripheral neuropathy (CIPN) occurs in approximately 68% of patients who receive neurotoxic chemotherapy and lasts at least 6 months post-chemotherapy in approximately 30% of individuals. CIPN is associated with decreased quality of life and functional impairments. Evidence suggests that CIPN symptoms are caused, in part, by enhanced excitability and impaired inhibition in the central nervous system. Transcutaneous electrical nerve stimulation (TENS) decreases pain by counteracting both of these mechanisms and is efficacious in other conditions associated with neuropathic pain. This single-arm study (n=29) assessed the feasibility of investigating TENS for CIPN after chemotherapy completion using a wireless, home-based TENS device. Eighty-one percent of eligible patients who were approached enrolled, and 85% of participants who received the TENS device completed the primary (6-week) study term. Qualitative interview data suggest that use of the device on the continuous setting that automatically alternates between 1-hour stimulation and rest periods for 5 hours/day would be acceptable to most participants. Significant (i.e., p

Background The utilization of inpatient medical services by patients with glioblastoma (GBM) is not well studied. We sought to describe causes, frequency, and outcomes of acute care visits in GBM. Methods We conducted a retrospective study of 158 GBM patients at the University of Rochester over 5 years. Electronic medical records were reviewed to identify all local and outside acute care visits. Acute care visits were defined as any encounter resulting in an emergency department visit or inpatient admission. Results Seventy-one percent (112/158) of GBM patients had 235 acute care visits corresponding to 163 hospitalizations (69%) and 72 emergency department visits (31%). Sixty-three percent of patients had multiple visits. Admission diagnoses were seizure (33%), neurosurgical procedure (15%), infection (12%), focal neurologic symptoms (9%), and venous thromboembolism (VTE, 9%). Forty-six patients had 1 or more visits for seizures. Median time to first acute care visit was 65.6 days and 22% of patients had an acute care visit within 30 days of diagnosis. Median length of stay was 5 days. Thirty-five percent of admitted patients were discharged home; 62% required a higher level of care than prior to admission (23% were discharged home with services, 17% to a nursing facility, 16% to hospice, 6% to acute rehab) and 3% died. Thirty-eight percent of patients had ACV within 30 days of death. Median survival was 14 months for patients who had acute care visits and 22.2 months for patients who did not. Conclusion The majority of GBM patients utilize acute care, most commonly for seizures. The high number of emergency department visits, short length of stay, and many patients discharged home suggest that some acute care visits may be avoidable.

Recent clinical trials demonstrated that adding tumor treating fields (TTF) to radiotherapy and temozolomide chemotherapy (the Stupp protocol) increased survival for glioblastoma (GBM) patients. However, data is lacking on the magnitude of this survival effect when the regimen is used outside of a clinical trial as part of routine clinical practice. In the present study, we retrospectively identified adult patients with newly diagnosed GBM (n = 240) treated with the Stupp protocol at our institution from January 2005 to July 2017. We grouped patients into two time periods for comparison: 2005–2013 (group 1, Stupp protocol) and 2014–2017 (group 2, TTF+ Stupp protocol). Thirty-six percent (37/104) of patients in group 2 received TTF in conjunction with the Stupp protocol. Within group 2, the 37-patients who received TTF + Stupp had increased 6-month and 1-year survival rates compared to the 67-patients who received Stupp alone (97.1% vs. 75.7%, p = 0.006; 67.6% vs. 53.7%, p = 0.170, respectively). The improvement of survival rate at 6-month was further confirmed by a modified Poisson model (RR: 1.23, p = 0.010) adjusting for sex, age, performance status and extent of resection. However, we did not observe improvements in overall survival (OS) with a Cox model with TTF treatment modeled as a time-dependent covariate (HR = 0.87, p = 0.599). Furthermore, we did not find that the addition of TTF as a treatment option in our center significantly improved OS for patients in group 2 when compared to those in group 1 (429.0 vs. 395.0 days, p = 0.138). Therefore, while adding TTF to the Stupp protocol appeared to benefit patients with newly diagnosed GBM, this effect may be largely due to selection bias. Comprehensive studies including large number of patients as well as longer follow-up time are needed to validate our results.

Background: Glioma patients make frequent decisions regarding treatment and end-of-life care despite cognitive limitations. We evaluated the feasibility of incorporating the Macarthur Competence As...

Tumor-related epilepsy (TRE) is the most common cause of hospitalizations in patients with malignant gliomas leading to increased distress and decreased quality of life (QOL) for patients and caregivers. We sought to determine the feasibility of incorporating a structured TRE-specific education intervention into clinical practice while assessing effect on distress and TRE knowledge. We prospectively enrolled glioma patients and their caregivers on an IRB-approved study. Subjects underwent a pre-test to assess baseline knowledge regarding seizure management. A neuro-oncology provider guided subjects through a presentation focused on safety and home management of seizures. Seizure-related distress was measured before and after the educational intervention using a distress thermometer. A post-test was completed. At 2 and 6 months, distress was re-assessed and post-tests were repeated. Subject satisfaction was assessed. Fifty subjects (23 patients, 27 caregivers) were enrolled. Median age was 59. Fifty-seven percent of patients had TRE. Median time to completion was 21.5 min. Median baseline distress scores were 2/10 for patients and 5/10 for caregivers. Distress scores decreased by a mean of 1.5 points and TRE knowledge increased by 2 points for all subjects between the initial and 2-month visit. Ninety-eight percent of subjects strongly agreed that the education was helpful and informative. Caregivers reported more distress despite better baseline seizure knowledge than patients. Structured TRE education is feasible in patients with gliomas and their caregivers and may be effective in reducing distress. Further prospective studies are warranted to assess effects on hospitalizations, cost, and QOL.

Objective To describe the currently accepted standard-of-care practice for surgical and medical management of newly diagnosed high-grade glioma. Data Sources Peer-reviewed journals, nationally accepted guidelines, and personal experience of the authors. Conclusion There is a widely accepted standard-of-care treatment protocol for patients with newly diagnosed high-grade glioma that includes maximal safe resection followed by radiation therapy with concurrent and adjuvant temozolomide. The regimen is well-tolerated and side effects are manageable. Implications for Nursing Practice Nurses who are involved in the care of patients with newly diagnosed high-grade glioma should be familiar with the regimen and its side effects to provide crucial patient and caregiver education in an accurate and beneficial manner.

BACKGROUND: Tumor related epilepsy (TRE) occurs in over 50% of glioma patients and is the most common cause of emergency room visits and hospitalizations. TRE can lead to increased cost and health care utilization, higher distress and decreased quality of life. We designed a structured TRE-specific education intervention aimed at patients and caregivers. In this study, we sought to determine the feasibility of incorporating this into clinical practice while assessing distress and effect of the intervention on baseline TRE knowledge. MATERIAL AND METHODS: We prospectively enrolled glioma patients (with or without TRE) and caregivers on an IRB approved study. Subjects underwent a pre-test to assess baseline knowledge regarding seizure management. A neuro-oncology provider guided patients and caregivers through a short presentation focused on home care and interventions in the event of an acute symptomatic seizure. Distress due to seizures was measured before and after the educational intervention using a distress thermometer. A post-test was also completed. At two and six months, distress was re-assessed and post-tests were repeated. Patient and caregiver satisfaction with the intervention was rated at the initial visit using Likert scales and with qualitative feedback. RESULTS: 52 subjects (24 patients, 28 caregivers) were enrolled. Median age was 59. TRE was present in 57% of patients. Patient tumors were glioblastoma (58.3%), anaplastic astrocytoma (25%) and anaplastic oligodendroglioma (16.7%). Median time to completion of distress assessments, pre-test, intervention and post-test was 21.5 minutes. Median baseline distress scores were 2/10 for patients and 5/10 for caregivers. Distress scores decreased by a mean of 1.5 points for all subjects between the initial and two-month follow-up visit. Median pre-test and post-test scores regarding TRE knowledge for all subjects were 7/9 and 9/9, respectively. All subjects considered the education understandable and stated they would recommend the intervention. 98% of subjects strongly agreed that the education was helpful and informative. Caregivers reported more distress despite better baseline seizure knowledge than patients and retained more knowledge at the two and six-month follow-up visits. CONCLUSION: A structured TRE education intervention is feasible in glioma patients and their caregivers. Our data suggests that it may be effective in reducing distress and improving awareness regarding seizure management. Structured TRE education should be considered in all glioma patients and caregivers. Further prospective studies are warranted to assess efficacy and the effect on acute care utilization, cost and distress.

Background American Society for Clinical Oncology (ASCO) quality measures for terminal cancers recommend early advance care planning and hospice at the end of life. We sought to evaluate adherence to 5 palliative care quality measures and explore associations with patient outcomes in glioblastoma. Methods This is a retrospective analysis of 117 deceased glioblastoma patients over 5 years. Records were reviewed to describe adherence to palliative care quality measures and patient outcomes. Data regarding emotional assessments, advance directives, palliative care consultation, chemotherapy administration, hospice, location of death, and overall survival were collected. Results Median overall survival was 12.9 months. By the second oncology visit, 22.2% (26/117) had an emotional assessment completed. Advance directives were documented for 52.1% (61/117) by the third neuro-oncology visit (30/61 health care proxy), yet 26.5% (31/117) did not have any advance directive before the last month of life. With regard to other ASCO quality measures, 36.8% (43/117) had a palliative care consult; 94.0% (110/117) did not receive chemotherapy in the last 14 days of life; 59.8% (70/117) enrolled in hospice >7 days before death; and 56.4% (66/117) died in a home setting. Patients who enrolled in hospice >7 days before death were 3.56 times more likely to die in a home setting than patients enrolled Conclusions Late advance directive documentation, minimal early palliative care involvement, and the association of early hospice enrollment with death in a home setting underscore the need to improve care and better define palliative care quality measures in glioblastoma.

BACKGROUND: Understanding the caregiver experience in gliomas is critical due to cognitive dysfunction and physical dependence. Caregiver burden, quality of life and distress for this population is not well described. MATERIAL AND METHODS: We performed an IRB-approved prospective study of 100 caregivers of patients with newly diagnosed gliomas enrolled over 2.5 years at a single academic institution. Caregivers were defined as individuals responsible for any aspect of patient support. Caregivers completed the Caregiver Quality of Life in Cancer (CQOLC) survey and questions about time required for patient care at 3 time points: initial diagnosis, 3 mo. and 6 mo. post-diagnosis. We described change in overall caregiver distress (CQOLC) and time spent on patient care, and also described the association between CQOLC scores and time required for patient care. RESULTS: 76/100 caregivers completed a survey for at least 1 time point: 65/100 at initial diagnosis, 43/100 at 3 mo. and 37/100 at 6 mo. The 76 caregivers (56 female) included 50 spouses, 13 children, 8 parents, 3 siblings and 2 friends. 58 were primary caregivers. Patients’ diagnoses included: 60 glioblastoma, 12 anaplastic astrocytoma, and 4 low grade glioma. Mean CQOLC scores did not significantly change from initial diagnosis (55.9) to 3 mo. (52.8) and 6 mo. (59.7) post-diagnosis (p-value = 0.56, 0.28, and 0.22 respectively). The proportion of caregivers spending >20 hrs/week on direct patient care did not significantly change from initial diagnosis (50%) to 3 mo. (47%) and 6 mo. (43%) post-diagnosis (p-value = 0.76, 0.50, and 0.66 respectively). At initial diagnosis, caregivers who spent >20 hrs/week on direct patient care had a significantly higher distress score on the CQOLC than those who spent

2073 Background: Venous thromboembolism (VTE) is a major cause of morbidity and mortality in patients with Glioblastoma (GBM). Despite a 7-28% incidence of VTE in GBM, there is no data to initiate ...

Objective: To characterize current incidence and treatment patterns of tumor associated epilepsy (TAE) in glioblastoma. Background AAN guidelines from 2000 recommended against seizure prophylaxis in patients with brain tumors due to AED toxicity but did not include patients receiving 2nd generation AEDs. No studies have sufficiently evaluated the benefit of 2 nd generation AEDs for prophylaxis of TAE. Design/Methods: We performed an IRB approved retrospective study of newly diagnosed GBM patients at the University of Rochester between 7/1/07 and 4/15/11. Records were reviewed to describe demographics, seizure incidence, time-to-first seizure, occurrence of status epilepticus, AED use and toxicity. Results: 175 patients with newly diagnosed GBM were identified. 94 (54%) developed TAE. 55 (31.4%) had early onset TAE (EOTAE), defined as having a seizure prior to diagnosis. 119 patients were seizure-naive at diagnosis: 39 (32.5%) developed late onset TAE (LOTAE), 71 (59.6%) remained seizure free and 9 patients were lost to follow up. 72 seizure-naive patients received an AED peri-operatively. 37 (51.4%) were weaned off AEDs and 32 (44.4%) were continued. Incidence of LOTAE and time to first seizure were comparable in AED-treated and untreated patients. 4 LOTAE patients presented with status epilepticus (SE), all in non AED-treated cases. In 10 patients, AEDs were withdrawn due to toxicity: 9 on phenytoin, with 1 case of toxic epidermal necrolysis and 1 on levetiracetam from depression. Conclusions: There is a high incidence of LOTAE in GBM. Prophylactic AED therapy did not reduce LOTAE but may have prevented SE. Minimal toxicity was observed with 2nd generation AEDs. The high burden of epilepsy in this population and tolerability of newer AEDS suggest that AAN guidelines should be revisited. A prospective study evaluating seizure prophylaxis with newer generation AEDs in glioblastoma is warranted. Disclosure: Dr. Wychowski has nothing to disclose. Dr. Buniak has nothing to disclose. Dr. Serventi has nothing to disclose. Dr. Henry has nothing to disclose. Dr. Mohile has nothing to disclose.