Care of the caregiver: Improving caregiver outcomes across the disease trajectory.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 82-82
Author(s):  
Margaretta Page ◽  
Idonah M. Molina ◽  
Judy Patt ◽  
Susan Marina Chang
Keyword(s):  
Brain Tumor ◽  
High Risk ◽  
Emotional Support ◽  
Health Care Team ◽  
Tumor Patients ◽  
Tumor Patient ◽  
Levels Of Care ◽  
Additional Layer ◽  
Wide Range ◽  
The Right

82 Background: Caregivers are essential members of the health team, often assuming diverse primary care roles for the cancer patient. Caregiver needs vary across the trajectory of illness and range from informational needs to emotional support to assistance with accessing resources. The needs of caregivers of brain tumor patients are complex not only because of the life threatening nature of the illness but also because of the wide range of neurological and cognitive deficits patients experience, a known risk factor for added stress to the caregiver. To address these challenges and improve caregiver outcomes, the Neuro Oncology Division at UCSF developed a program to provide an additional layer of care that includes information and support to caregivers of brain tumor patients across the trajectory of illness, from diagnosis to death. Methods: The program consists of a medical director and a dedicated nurse practitioner, social worker and coordinator, all focused on the caregiver of the brain tumor patient. The goals of the program are to provide information needed to assist with disease and symptom management, effective communication with the health care team, maximization of use of available resources, and to provide emotional support. Three groups of caregivers were targeted: caregivers of all new patients with a focus on newly diagnosed glioblastoma and caregivers of patients deemed at “high risk,” either identified by the provider, or because of the phase in the illness trajectory. Results: Since June 2013, 13 caregivers reported no needs for the first 4 months from diagnosis. 13 caregivers received care, with over half reporting concerns regarding financial issues and disability as well as need for emotional support around adjusting to the diagnosis, role changes, and care demands. In addition, varying levels of care have been provided to 70 caregivers of patients identified at “high risk” for distress due to disease progression or when transitioning to hospice. Conclusions: This program provides care to caregivers of brain tumor patients at specific time points to improve caregiver outcomes. Challenges include tailoring the information at the right time as well as measuring outcomes with minimal extra burden to the caregiver.

scholarly journals Essential language function of the right hemisphere in brain tumor patients

2004 ◽  
Vol 57 (1) ◽  
pp. 128-131 ◽  
Author(s):  
Alexander Thiel ◽  
Birgit Habedank ◽  
Lutz Winhuisen ◽  
Karl Herholz ◽  
Josef Kessler ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Right Hemisphere ◽  
Language Function ◽  
Tumor Patients ◽  
The Right

Symmetry of the arcuate fasciculus and its impact on language performance of patients with brain tumors in the language-dominant hemisphere

2017 ◽  
Vol 127 (6) ◽  
pp. 1407-1416 ◽  
Author(s):  
Margit Jehna ◽  
Juliane Becker ◽  
Karla Zaar ◽  
Gord von Campe ◽  
Kariem Mahdy Ali ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Fiber Tracking ◽  
Low Grade ◽  
High Grade ◽  
Arcuate Fasciculus ◽  
Language Performance ◽  
Language Deficits ◽  
Tumor Patients ◽  
Eloquent Areas ◽  
The Right

OBJECTIVECerebral damage in frontal, parietal, and temporal brain areas and, probably more importantly, their interconnections can lead to deficits in language. However, neural plasticity and repair allow the brain to partly compensate for neural injury, mediated by both functional and structural changes. In this study, the authors sought to systematically investigate the relationship between language performance in brain tumor patients and structural perisylvian pathways (i.e., the arcuate fasciculus [AF]) using probabilistic fiber tracking on diffusion tensor imaging. The authors used a previously proposed model in which the AF is divided into anterior, long, and posterior segments. The authors hypothesized that right-handed patients with gliomas in the language-dominant (left) hemisphere would benefit from a more symmetrical or right-lateralized language pathway in terms of better preservation of language abilities. Furthermore, they investigated to what extent specific tumor characteristics, including proximity to the AF, affect language outcome in such patients.METHODSTwenty-seven right-handed patients (12 males and 15 females; mean age 52 ± 16 years) with 11 low-grade and 16 high-grade gliomas of the left hemisphere underwent 3-T diffusion-weighted MRI (30 directions) and language assessment as part of presurgical planning. For a systematic quantitative evaluation of the AF, probabilistic fiber tracking with a 2 regions of interest approach was carried out. Volumes of the 3 segments of both hemispheric AFs were evaluated by quantifying normalized and thresholded pathways. Resulting values served to generate the laterality index of the AFs.RESULTSPatients without language deficits tended to have an AF that was symmetric or lateralized to the right, whereas patients with deficits in language significantly more often demonstrated a left-lateralized posterior segment of the AF. Patients with high-grade gliomas had more severe language deficits than those with low-grade gliomas. Backward logistic regression revealed the laterality index of the posterior AF segment and tumor grade as the only independent statistically significant predictors for language deficits in this cohort.CONCLUSIONSIn addition to the well-known fact that tumor entity influences behavioral outcome, the authors' findings suggest that the right homologs of structural language-associated pathways could be supportive for language function and facilitate compensation mechanisms after brain damage in functionally eloquent areas. This further indicates that knowledge about preoperative functional redistribution (identified by neurofunctional imaging) increases the chance for total or near-total resections of tumors in eloquent areas. In the future, longitudinal studies with larger groups are mandatory to overcome the methodological limitations of this cross-sectional study and to map neuroplastic changes associated with language performance and rehabilitation in brain tumor patients.

scholarly journals Podoplanin expression in primary brain tumors induces platelet aggregation and increases risk of venous thromboembolism

Blood ◽  
2017 ◽  
Vol 129 (13) ◽  
pp. 1831-1839 ◽  
Author(s):  
Julia Riedl ◽  
Matthias Preusser ◽  
Pegah Mir Seyed Nazari ◽  
Florian Posch ◽  
Simon Panzer ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Venous Thromboembolism ◽  
Platelet Aggregation ◽  
High Risk ◽  
Brain Tumors ◽  
Tumor Patients ◽  
Primary Brain Tumors ◽  
Key Points ◽  
Podoplanin Expression ◽  
Very High

Key Points Brain tumor patients have a very high risk of VTE. Podoplanin expression by primary brain tumors induces platelet aggregation and is associated with hypercoagulability and a high risk of VTE.

Family Camp: A multi-disciplinary intervention for brain tumor patients and families.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 240-240
Author(s):  
Margaretta S Page ◽  
Mary Lovely ◽  
Abigail Levinson Marks ◽  
Amanda K LaMarre ◽  
Susan M Chang ◽  
...  
Keyword(s):  
Health Care ◽  
Brain Tumor ◽  
Health Care Team ◽  
Family Counseling ◽  
Care Team ◽  
Therapeutic Interventions ◽  
Tumor Patients ◽  
Entire Family ◽  
Brief Cope ◽  
Survey Questions

240 Background: The diagnosis of a brain tumor is a catastrophic life changing event that impacts the entire family. Patients and caregivers experience dramatic role changes, concern for their children, financial stress, and isolation. For many, the situation is overwhelming. A novel intervention to address these needs is “Family Camp”. Our vision for camp was to provide respite to the entire family, decrease caregiver stress, improve family connections and promote a sense of understanding and connection with the community at large. Methods: In a unique partnership with the widow of a former patient, the members of the UCSF Neuro-Oncology Division created and offered a weekend camp for brain tumor patients with children. Team members included MDs, RNs, social workers, psychologists, artists, body workers, “camp counselors” and community volunteers. In addition to respite, camp was structured through art, songs, projects and games to deliver opportunities for understanding and community building, including understanding the disease and its impact on the family. Therapeutic interventions included couples activities, counseling, parenting strategies, and providing a sense of connection to others dealing with brain tumors, the health care team, and camp volunteers. Anxiety, stress, depression, coping and values based living were measured pre and post camp using DASS21, CES-D, Brief Cope, Values Based Living instruments, and survey questions. Results: 11 families attended camp for 3 days in 2014. Improvement was noted in post camp testing of depression, anxiety and stress versus pre-camp. Survey questions showed the most common and important outcome to be connection, specifically that patients, caregivers, and children made connections with similar others. Families reported being able to relax and felt taken care of. They liked the opportunity for undistracted family time, getting to know their health providers outside of the office, and couples benefited from family counseling. Conclusions: Capitalizing on the unique skills of a multi-disciplinary team, one that includes the patient’s health care team, can lead to the delivery of a novel intervention that improves the illness experience of brain tumor patients and families.

scholarly journals The management of lomustine overdose in malignant glioma patients

2014 ◽  
Vol 1 (4) ◽  
pp. 178-183 ◽  
Author(s):  
Hans-Georg Wirsching ◽  
Isabel Tritschler ◽  
Antonella Palla ◽  
Christoph Renner ◽  
Michael Weller ◽  
...  
Keyword(s):  
Brain Tumor ◽  
High Risk ◽  
Malignant Glioma ◽  
Standard Of Care ◽  
Low Grade Glioma ◽  
Anaplastic Oligodendroglioma ◽  
Low Grade ◽  
Potential Complication ◽  
Tumor Patients

Abstract Lomustine is an oral alkylating drug commonly used for brain tumor patients. Recently, the lomustine-containing PCV polychemotherapy regime (procarbazine, CCNU/lomustine, and vincristine) in combination with radiotherapy has become the standard of care for anaplastic oligodendroglioma with 1p/19q codeletion and high-risk low-grade glioma. Here, we review the literature of all reported cases of lomustine overdose, highlight complications by exemplifying a case of inadvertent lomustine overdose, and outline the management of this potential complication of outpatient PCV therapy.

scholarly journals COT-29 The Japan Brain Tumor Alliance: Achievements in 2020–2021: highlights for neuro-oncologists and healthcare professionals

2021 ◽  
Vol 3 (Supplement_6) ◽  
pp. vi31-vi31
Author(s):  
Keiko Nomura ◽  
Laureline Gatellier ◽  
Shuji Yamaguchi ◽  
Shigeo Kato ◽  
Hisato Tagawa
Keyword(s):  
Brain Tumor ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Occupational Therapists ◽  
Patient And Public Involvement ◽  
Tumor Patients ◽  
Non Profit ◽  
Tumor Patient ◽  
Community Information

Abstract Brain tumors are a major shock at diagnosis for patients and their families, and the journey is hectic, impacted in various and complex ways, including acute and chronic episodes. The Japan Brain Tumor Alliance is a non-profit organisation, established in 2006 to support patients and their families. As our key activity, JBTA offers nation-wide patient support through patient-gathering meetings with and without health care professionals to openly share needs, issues and concerns, partly summarized and shared in the scientific field (Gatellier, 2021, OT Journal, vol 55 no.3, 257–259; Gatellier, 2021, MASCC Annual Meeting). JBTA actively collaborates with the International Brain Tumor Alliance, with recent outcome of an international survey featuring the brain-tumor patient and caregiver experience during COVID-19 pandemic (Voisin et al., 2020, Neuro-oncology advances, 2(1), vdaa104). As part of collaboration with healthcare professionals in 2020–21, JBTA achievements include the review of clinical guidelines (as part of Patient and Public Involvement activity), information-sharing events with the Japan Clinical Oncology Group and the seminar with a group including occupational therapists. In addition, to highlight patients’ needs and priorities to the neuro-oncology community, since March 2020, JBTA shares the Japanese translation of the monthly IBTA e-newsletter broadcasting the latest and most relevant scientific, community information and brain tumor-related events around the world to healthcare professionals and brain tumor patients and families in Japan. These enlightening events place JBTA in an ideal position to lead research in the direction most meaningful to brain tumor patients.

Care of the caregiver: Transitions at the end of life.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 152-152
Author(s):  
Margaretta Page ◽  
Idonah M. Molina ◽  
Judy Patt ◽  
Susan Marina Chang
Keyword(s):  
Palliative Care ◽  
Brain Tumor ◽  
End Of Life ◽  
Palliative Care Service ◽  
Transitions Of Care ◽  
Terminal Phase ◽  
Tumor Patients ◽  
Brain Tumor Patient ◽  
Tumor Patient ◽  
The Brain

152 Background: Transitions of care can be particularly stressful on cancer patients and caregivers when goals of care are changing, especially at the time when active specialty care shifts to hospice. There are common caregiver issues at the end of life for the brain tumor patient as for any cancer patient however there are a subset of challenging problems unique to the disease. One of the goals of the UCSF caregiver program is to provide information on effective care at home and at the end of life to the caregiver when faced with a family member with a progressive, life threatening brain tumor. Methods: The caregiver program at UCSF sought to overcome the major caregiver challenges of the brain tumor patient at the end of life in two ways. First, caregivers of patients at the terminal phase in the illness trajectory were proactively contacted by a member of the caregiver team to offer informational and emotional support around end-of-life issues. The team also makes contact with the hospice agency in order to provide information about specifics regarding symptoms, family dynamics, or any relevant history. Second, in collaboration with the palliative care service, a palliative care and end of life handbook for brain tumor patients was planned. Results: Since June 2013, 70 caregivers of patients have been identified as “high risk” for distress because of disease progression or transition to hospice care. In addition to providing support to the caregiver at the end of life, the palliative care handbook was produced and distributed. The handbook provided general information on the role of hospice, advance care planning, and bereavement and more importantly incorporates specific sections that highlight the unique challenges regarding neurological symptoms that include cognitive and behavioral changes, language difficulties, corticosteroid use and the inability of oral intake that can significantly affect anti-seizure medication administration. Conclusions: Additional focus to ease transitions for caregivers of brain tumor patients at end of life is needed. Future projects involve creating a handbook to provide resources to hospice professionals caring for brain tumor patients that will highlight common symptoms expected, (ie. seizures) and options for management.

scholarly journals Language Neuroplasticity in Brain Tumor Patients Revealed by Magnetoencephalography

2020 ◽  
Vol 32 (8) ◽  
pp. 1497-1507 ◽  
Author(s):  
Vitória Piai ◽  
Elke De Witte ◽  
Joanna Sierpowska ◽  
Xiaochen Zheng ◽  
Leighton B. Hinkley ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Left Hemisphere ◽  
Amplitude Modulation ◽  
Language Impairment ◽  
Picture Naming ◽  
Right Hemisphere ◽  
Neuronal Response ◽  
Naming Task ◽  
Tumor Patients ◽  
The Right

Little is known about language impairment in brain tumor patients, especially in the presurgical phase. Impairment in this population may be missed because standardized tests fail to capture mild deficits. Additionally, neuroplasticity may also contribute to minimizing language impairments. We examined 14 presurgical patients with brain tumors in the language-dominant hemisphere using magnetoencephalography (MEG) while they performed a demanding picture–word interference task, that is, participants name pictures while ignoring distractor words. Brain tumor patients had behavioral picture-naming effects typically observed in healthy controls. The MEG responses also showed the expected pattern in its timing and amplitude modulation typical of controls, but with an altered spatial distribution of right hemisphere sources, in contrast to the classic left hemisphere source found in healthy individuals. This finding supports tumor-induced neural reorganization of language before surgery. Crucially, the use of electrophysiology allowed us to show the “same” neuronal response in terms of its timing and amplitude modulation in the right hemisphere, supporting the hypothesis that the processes performed by the right hemisphere following reorganization are similar in nature to those (previously) performed by the left hemisphere. We also identified one participant with a fast-growing tumor affecting large parts of critical language areas and underlying ventral and dorsal white matter tracts who showed a deviant pattern in behavior and in the MEG event-related responses. In conclusion, our results attest to the validity of using a demanding picture-naming task in presurgical patients and provide evidence for neuroplasticity, with the right hemisphere performing similar computations as the left hemisphere typically performs.

scholarly journals Peripheral circulation miRNA expression of pediatric brain tumors and its relation to tumor miRNA expression levels

2020 ◽  
Vol 26 (2) ◽  
pp. 136-144 ◽  
Author(s):  
Markus Bookland ◽  
Eileen Gillan ◽  
Xianyuan Song ◽  
Antonina Kolmakova
Keyword(s):  
Brain Tumor ◽  
Brain Tumors ◽  
Mirna Expression ◽  
Tumor Tissue ◽  
Pediatric Brain Tumor ◽  
Pediatric Brain Tumors ◽  
Tumor Patients ◽  
Tumor Patient ◽  
Serum Mirna ◽  
Pediatric Brain

OBJECTIVEMicro RNAs (miRNAs) in peripheral biofluids (e.g., blood, saliva, urine) have been investigated as potential sources of diagnostic and prognostic information for a variety of tumor types, including pediatric brain tumors. While significant predictive associations have been identified between unique serum miRNA concentrations and some pediatric brain tumors, it is unclear whether serum miRNA abnormalities in pediatric brain tumor patients are representative of miRNA alterations in the tumor tissue compartment or whether they represent host tissue reactions to the presence of a brain tumor. The authors sought to identify whether serum miRNA changes in pediatric brain tumor patient sera could be explained by miRNA alterations within their tumors.METHODSMatched serum and tissue samples were taken from a cohort of pediatric brain tumor patients (juvenile pilocytic astrocytoma [JPA] = 3, medulloblastoma = 4, ependymoma = 3), and unmatched control samples (n = 5) were acquired from control pediatric patients without oncological diagnoses. Extracted RNAs were tested within an array of 84 miRNAs previously noted to be relevant in a variety of brain tumors.RESULTSmiR-26a-5p correlated strongly in JPA patients within both the serum and tumor tissue samples (R2 = 0.951, p = 0.046), and serum levels were highly predictive of JPA (area under the curve = 0.751, p = 0.027). No other miRNAs that were significantly correlated between biological compartments were significantly associated with brain tumor type. In total, 15 of 84 tested miRNAs in JPA patients, 14 of 84 tested miRNAs in ependymoma patients, and 4 of 84 tested miRNAs in medulloblastoma patients were significantly, positively correlated between serum and tumor tissue compartments (R2 > 0.950, p < 0.05).CONCLUSIONSThe majority of miRNA changes in pediatric brain tumor patient sera that are significantly associated with the presence of a brain tumor do not correlate with brain tumor miRNA expression levels. This suggests that peripheral miRNA changes within pediatric brain tumor patients likely derive from tissues other than the tumors themselves.

scholarly journals Liquid Biopsy and Primary Brain Tumors

Cancers ◽  
2021 ◽  
Vol 13 (21) ◽  
pp. 5429
Author(s):  
Robert H. Eibl ◽  
Markus Schneemann
Keyword(s):  
Brain Tumor ◽  
Brain Tumors ◽  
Minimally Invasive ◽  
Tumor Cells ◽  
Circulating Tumor Cells ◽  
Liquid Biopsy ◽  
Clinical Management ◽  
Tumor Patients ◽  
New Era ◽  
The Right

Two decades of “promising results” in liquid biopsy have led to both continuing disappointment and hope that the new era of minimally invasive, personalized analysis can be applied for better diagnosis, prognosis, monitoring, and therapy of cancer. Here, we briefly highlight the promises, developments, and challenges related to liquid biopsy of brain tumors, including circulating tumor cells, cell-free nucleic acids, extracellular vesicles, and miRNA; we further discuss the urgent need to establish suitable biomarkers and the right standards to improve modern clinical management of brain tumor patients with the use of liquid biopsy.

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