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Purpose: Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C)., Methods: Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be "missed" by the screening items., Results: Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2., Conclusions: We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor., Competing Interests: Declarations. Ethical approval: Ethical approval for the Care-IS trial was obtained from all sites involved in the trial (NSW: HREC 16/105; SJOG: 671; SCGH: 2013-172; Curtin University: HR 17/2013). Trial registration number: Australian and New Zealand Clinical Trials Registration (ACTRN) 12612001147875. Consent to participate: Informed consent was obtained from all individual participants included in the original Care-IS study. Consent to publish: Informed consent was obtained from all individual participants to publish their data. Competing interests: The authors have no relevant financial or non-financial interests to disclose., (© 2024. The Author(s).) more...

Background: Glioma ‎(GL)‎, a primary brain tumor, presents significant challenges in patient care due to its complex disease trajectory and psychological impact. Phased nursing interventions, grounded in the Chronic Illness Trajectory Model (CITM), offer a holistic approach to addressing these multifaceted needs., Objective: The objective of this study was to assess the impact of phased nursing within the CITM on the psychological well-being, quality of life, and cancer-related fatigue (CRF) of glioma patients., Methods: A total of 100 GL patients undergoing treatment at our hospital between February 2020 and February 2021 were enrolled in this randomized controlled trial. Patients were randomly assigned to either the control group, which received standard routine care, or the observation group, which received phased nursing interventions based on the CITM framework. The mental state, quality of life, and CRF scores of the patients were assessed using validated measures at baseline and following the intervention period. Statistical analyses were conducted to compare the outcomes between the two groups., Results: The findings revealed that patients in the observation group exhibited significantly higher scores in mental state and quality of life domains compared to those in the control group (P < .05). Additionally, patients receiving phased nursing showed a significant reduction in CRF scores post-intervention. These results indicate that phased nursing within the CITM framework has a beneficial effect on the psychological well-being and overall quality of life of GL patients while also mitigating CRF., Conclusions: Our findings suggest that incorporating phased nursing interventions into the care of GL patients can lead to improvements in psychological outcomes, CRF, and quality of life. These findings underscore the importance of adopting holistic approaches to patient care, particularly in chronic disease management. more...

Objective: To describe best practices and guidelines in symptom management at the end of life for adults with malignant glioma., Data Sources: Journal articles, evidence-based reviews, textbooks, and clinical guidelines., Conclusion: Symptom management is an essential element of end-of-life care that aims to preserve dignity and quality of life for patients with glioma and their family caregivers., Implications for Nursing Practice: Advance care planning using a holistic approach to the patient's symptoms experience and goals of care are necessary to develop, implement, and evaluate outcomes of an evidence-based plan of care tailored for each patient and family., (Copyright © 2018. Published by Elsevier Inc.) more...

Objectives: To review the existing glioma literature and National Comprehensive Cancer Network current standard-of care guidelines for recurrent high-grade glioma, which includes surgery, radiation, and systemic therapies., Data Sources: PubMed, MedlinePlus, Science Direct, National Comprehensive Cancer Network, and Google Scholar were searched. Key words for databases were high-grade glioma, glioblastoma, recurrent, surgery, radiation, and systemic therapy., Conclusion: Approved treatments for patients with recurrent high-grade glioma are limited and do not significantly impact progression-free survival rates, nor do they offer long-term benefit in symptom improvement or quality of life. Particular consideration for progression versus pseudoprogression should be evaluated before pursuing recurrent therapies., Implications for Nursing Practice: Given the limited availability of standard-of-care treatments, clinical trials should be prioritized to maximize future treatment options. Individual performance status, genetic and molecular profiles, as well as goals of care and quality of life are important considerations in the context of treatment plans., (Copyright © 2018. Published by Elsevier Inc.) more...

Objectives: To provide an overview of the symptoms commonly experienced by patients with malignant glioma, and discuss the pathophysiology and interventions associated with those., Data Sources: A review of published scientific literature and clinical literature, and online information from National Comprehensive Cancer Network, Oncology Nursing Society, Epilepsy Foundation of America, and the American Brain Tumor Association., Conclusion: The unique symptom burden associated with a malignant glioma diagnosis often disrupts the lives of patients and their caregivers. Clinical support and interventions addressing malignant glioma-related focal deficits, seizures, headaches, venous thromboembolism, mood disturbances, fatigue, and sleep-wake disturbance can positively impact patient and caregiver experiences while living with malignant glioma., Implications for Nursing Practice: Understanding the pathophysiology of these symptoms and reviewing nursing-led and supported interventions will empower the nurse in providing comprehensive care to patients with malignant glioma and their caregivers., (Copyright © 2018. Published by Elsevier Inc.) more...

Objectives: To discuss the role of survivorship care and survivorship care plans, including a recently developed neuro-oncology-specific plan care (https://www.soc-neuro-onc.org/SNO/Resources/Survivorship&#95;Care&#95;Plan.aspx) for adult patients diagnosed with primary glial neoplasms and the necessary educational needs of oncology nurses., Data Sources: Published peer-reviewed literature and resources from cancer and neuro-oncology professional organizations and patient advocacy organizations., Conclusion: The current Commission on Cancer mandates adult cancer patients treated with curative intent each receive an individualized survivorship care plan. Patients with glioma are likely to benefit from receiving survivorship care, including survivorship care plans aimed at addressing the complex and evolving needs of this unique patient population throughout their illness trajectory., Implications for Nursing Practice: Nurse professionals are critical to the development and implementation of cancer survivorship care. This growing leadership role presents oncology nurses with specific and new educational needs regarding survivorship care., (Copyright © 2018. Published by Elsevier Inc.) more...

Objective: To present and describe three emerging areas of glioma research: volumetric imaging analysis, molecular profiling, and the use of liquid biopsies., Data Sources: Published manuscripts and textbook chapters., Conclusion: As new imaging and molecular technologies for the patient with glioma become main-stream, precise care can be individualized and personalized., Implications for Nursing Practice: Oncology nurses caring for patients with gliomas can gain knowledge of emerging research and help increase accessibility to this technology by referring patients to clinical trials that apply this technology., (Copyright © 2018. Published by Elsevier Inc.) more...

Background: Among a sample of patient-informal caregiver dyads in the specific context of new diagnoses of high-grade glioma in the time-frame between diagnosis and the third month following diagnosis, we examine whether the coping strategies implemented by the patients and their caregivers influenced their own quality of life (QoL) and the QoL of their relatives., Methods: Thirty-eight dyads with patients having recent diagnoses of high-grade glioma were involved in this longitudinal study. The self-reported data include QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology Quality of Life), and coping strategies (BriefCope). Data were collected at T1 corresponding to the time-frame between diagnosis and postsurgical treatment initiation and T2 corresponding to the 3-month post-inclusion follow-up., Results: Coping strategies based on social support and avoidance were the least used at baseline and the 3-month follow-up, both for patients and caregivers. At the 3-month follow-up, the use of social support at baseline was significantly related to lower scores of QoL for the patients and with higher QoL for the caregivers. For the patient, the use of problem-solving or positive thinking at baseline was not related to his/her QoL, while it was related to more satisfactory QoL scores for the caregiver. The use of avoidance at baseline was linked to a higher 3-month QoL for the patients and a lower 3-month QoL for the caregivers. Using the specific dyadic analyses (actor-partner interdependence model), the 3-month patient's QoL was lower (β = - 0.322; p = 0.03) when the patient mobilized the social support strategy at baseline, but was higher(β = 0.631; p < 10 - 3 ) when his/her informal caregiver used this strategy. After adjustment for sex, age, and baseline PGI score, the link between high use of the social support strategy at baseline by the caregiver and the patient's 3-month QoL, remained present (positive partner effect; β =0.675; p < 10 - 3 )., Conclusion: The QoL for patients and their informal caregivers since the time of diagnosis is directly related to the use of coping strategies based on social support at time of diagnosis. more...

Purpose: The disease and treatment trajectory of patients with high-grade glioma is a burdensome period for the patients' closest relatives who become informal caregivers. Caregivers experiencing this demanding shift in role are at risk of developing symptoms such as depression. Few studies have explored the needs and experiences of bereaved caregivers, and there is lack of evidence-based practice. This study explores the perspectives of newly bereaved caregivers to patients with high-grade glioma on end-of-life caregiving and bereavement., Methods: This qualitative exploratory study was composed of individual semistructured telephone interviews with bereaved caregivers (n = 8) to patients with high-grade glioma who deceased during participation in the mixed-methods Neuro-oncological Rehabilitation study. A thematic analysis was conducted following Braun and Clarke's guidelines., Results: Four main themes were identified concerning the bereavement experience: (1) late-stage caregiving is comprehensive and taxing, (2) releasing the responsibility of the primary caregiving role, (3) feelings of grief and relief, and (4) suggestions for clinical practice., Conclusion: Late-stage caregiving is a difficult and challenging experience at the end of an already burdening treatment trajectory. Caregivers prefer to actively share responsibility and practical tasks with professionals, family, and friends. The bereaved caregivers' key areas of concern indicate the need for additional research in advance care planning within neuro-oncology caregiving to establish evidence-based practice guidelines and recommendations. more...

Objective: Malignant glioma (MG) is a devastating neuro-oncologic disease with almost invariably poor prognosis, yet many families facing malignant glioma have poor prognostic awareness (PA), or the awareness of the patient's incurable disease and shortened life expectancy. Accurate PA is associated with favorable medical outcomes at end-of-life for patients and psychosocial outcomes for informal caregivers (ICs) through bereavement. To date, however, no study has specifically examined PA among MG ICs and the information they receive that shapes their awareness., Methods: Thirty-two ICs of patients with malignant glioma completed a semi-structured assessment of their awareness of the incurability and life expectancy of their loved one's illness, and to understand their sources of prognostic information and preferences for communication of prognostic information., Results: Twenty-two (69%) ICs had full PA-awareness of the incurability of malignant glioma and accurate estimates of their loved ones' life expectancy. Twenty-three (72%) felt that prognostic information was extremely or very important to possess, and 16 (50%) desired more prognostic information. The majority of ICs received prognostic information from physicians and the Internet. Qualitative analyses revealed that many ICs had difficulty navigating medical encounters in which they concurrently wanted to elicit prognostic information from physicians and protect patients from such information., Conclusions: Accurate and timely PA is necessary for ICs to serve as critical members of health care teams. Interventions are needed to foster ICs' skills in navigating prognostic communication with patients and health care providers and thereby improve their ability to advocate for their loved one's wishes., (Copyright © 2017 John Wiley & Sons, Ltd.) more...

Introduction: Patients with gliomas generally present cognitive, neuropsychiatric and functional deficits. Although previous research has shown that their caregivers present a poor quality of life and poor mental health, only a few studies have tested in a comprehensive way which deficits/preserved abilities of patients predominantly impact their caregivers. Furthermore, only a few studies have focused on the social impact of gliomas, which may also damage the caregivers' quality of life. Therefore, this cross-sectional study aims to investigate which patients' impairments are particularly deleterious for the caregivers and whether the histological characteristics of the gliomas also affect their quality of life., Methods and Analysis: In order to examine these research questions, this study intends to include 180 patients (60 patients with grade II gliomas, 60 patients with grade III gliomas and 60 patients with grade IV gliomas), their caregivers and 60 healthy controls. While patients will complete a full battery of cognitive, neuropsychiatric, functional and social tests, caregivers will complete questionnaires about their quality of life, depression, anxiety and burden. Patients' performances and caregivers' reports of depression and anxiety will be compared with the scores of healthy controls. Eventually, our aim will be to provide specific care support both to reduce patients' deficits and alleviate caregivers' difficulties., Ethics and Dissemination: The study has obtained the approval of the local faculty ethics committee ('Comité d'éthique en sciences comportementales'; 2016-5 S41 and 2015-3 S37). On completion of the study, data will be kept by Lille University for 5 years before they are destroyed. Study findings will be disseminated through peer-reviewed journal publications and conference presentations with no reference to a specific individual., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.) more...

Purpose: To explore the emotional concerns and coping strategies of patients with Low Grade Glioma (LGG) and whether or not their caregivers are reliable in reporting these concerns as surrogate informants., Methods: An explorative cross-sectional study. Patients who had undergone a neurosurgical procedure at least one year before this study for LGG and who were capable of participating in a face-to-face interview were included. Each patient nominated a reference caregiver. Both the patient and the caregiver were interviewed independently, using the Beck Depression Inventory Scale, the State - Trait Anxiety Inventory, and the Jalowiec Coping Scale., Main Results: Forty-six patients and 46 caregivers were included. The average scores of the Beck scale were homogeneous between patients and caregivers (7.76 [CI 95% 5.76-9.75] vs. 6.23 [CI 95% 4.57-7.90]; p = 0.102). Patients reported significantly greater state and trait anxiety (44.26 [CI 95% 40.21-48.31] and 37.95 [CI 95% 34.97-40.94]), respectively compared to their caregivers (40.28 [CI 95% 36.64-43.91] and 35.17 [CI 95% 32.16-38.18]). The coping strategies enacted were homogeneous between patients and caregivers (82.78 [CI 95% 77.21-88.35] vs (80.93 [CI 95% 76.32-85.55]; p = 0.102) while the kind of strategies adopted were significantly diverse., Conclusions: Patients suffer from depression and greater state anxiety as compared to trait anxiety; moreover, they enact less than half of the available coping strategies. Caregivers may be involved as surrogate informants when necessary for health-care professionals to detect depression while more caution is advised for what concerns anxiety and the coping strategies enacted by patients., (Copyright © 2017 Elsevier Ltd. All rights reserved.) more...

Purpose: Patients with a high-grade glioma (HGG) and their caregivers have imminent and changing informational and supportive care needs. The purpose of this study was to investigate the feasibility and safety of a Danish brain tumour website (BTW) in patients with HGG and their caregivers. We hypothesized that the BTW would be feasible, safe, helpful and convenient for individuals to obtain support and information., Methods: This is an exploratory, prospective six-month feasibility study. Two separate samples were collected: 1) a nationwide sample consisting of BTW visitors over a six-month period and 2) a sample of patients with HGG (n = 9) and their caregivers (n = 8) interviewed three months after being introduced to the BTW., Results: The BTW was accessed from 131 different Danish towns and cities, and from ten different countries. The website had 637 unique users. The interviews identified one overarching theme 'challenges and barriers'. Being newly diagnosed, patients described a chaotic and overwhelming life situation and had difficulties in identifying with their new and changed role. When using the BTW, some patients and caregivers experienced technological challenges, while the former also experienced cognitive difficulties. Caregivers greatly appreciated that the BTW was available and that easily accessible specialists could answer their questions., Conclusion: The BTW attracted nationwide interest and activity, but the burden of being newly diagnosed with HGG combined with a low level of internet skills and cognitive deficits were barriers to participation., Trial Registration Number: ISRCTN22038059., (Copyright © 2015 The Authors. Published by Elsevier Ltd.. All rights reserved.) more...

Introduction: High-grade glioma (HGG) is a rapidly progressive and debilitating disease. Primary carers experience significant levels of distress which impacts on their experience of caregiving, the quality of care received and the community in terms of the increased reliance on healthcare due to the potential development of complicated grief. This paper describes the protocol for testing the efficacy and feasibility of an intervention for primary carers of patients with HGG in order to improve preparedness to care and reduce carer distress., Methods: Randomised controlled trial. The target population is carers of patients with HGG who are undergoing combined chemoradiotherapy. The intervention consists of 4 components: (1) initial telephone assessment of unmet needs of the carer, (2) tailoring of a personalised resource folder, (3) home visit, (4) ongoing monthly telephone contact and support for 12 months. The control arm will receive usual care., Primary Hypothesis: This intervention will improve preparedness for caring and reduce carer psychological distress., Secondary Hypothesis: This intervention will reduce carer unmet needs. The longer term aim of the intervention is to reduce patient healthcare resource utilisation and, by doing so, reduce costs. Assessments will be obtained at baseline, 8 weeks post intervention, then 4, 6 and 12 months. Participants will also complete a healthcare utilisation checklist and proxy performance status which will be assessed at baseline and monthly. 240 carers will be recruited. The sample size is 180. Multilevel mixed effects regression models will be applied to test the effect of the intervention., Ethics: Ethics approval has been gained from Curtin University and the participating sites., Dissemination: Results will be reported in international peer-reviewed journals., Trial Registration Number: Australian and New Zealand Clinical Trials Registration (ACTRN)12612001147875., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/) more...

Background: There is a lack of knowledge regarding the breadth of needs for rehabilitation and supportive care across the disease and treatment trajectory for patients with a high-grade glioma (HGG) and their caregivers., Objective: The aim of this study was to elucidate the experiences and needs for rehabilitation and supportive care in patients with HGG and their caregivers., Methods: Patients with malignant glioma (N = 30) and their caregivers (N = 33) were interviewed five times during the first year of the HGG trajectory. A thematic analysis of interviews at five time points revealed five main themes describing the experiences related to the illness trajectory and needs for rehabilitation and supportive care., Results: The five main themes identified were (a) individual strategy for acquiring prognostic information, (b) shared hope, (c) engagement in health promotion activities, (d) adjustment to symptom limitations, and (e) role transition from family member to caregiver., Conclusion: The individual and sometimes opposing preferences among patients and their caregivers for prognostic information is a chosen strategy that supports individual needs in managing the HGG trajectory. Patients and caregivers experience a feeling of solidarity, from which shared hope arises; however, this hope needs to be supported by healthcare professionals. Driven by hope, they seek to optimize the therapeutic effect of the oncological treatments by being engaged together in health promoting activities. As symptoms progressed, the need for information and guidance regarding symptoms and supportive care interventions became evident. Caregivers play a significant supporting role for the patients and need special support themselves and practical assistance especially when symptoms progress. Finally, there is a need for rehabilitation programs that target the cognitive ability of the patients to participate actively. more...

Background: The prognosis for glioma remains dismal, and little is known about the final disease phase. To obtain information about this period, we surveyed caregivers of patients who were registered in the German Glioma Network and who died from the disease., Methods: A questionnaire with 15 items, focusing on medical, logistic, and mental health support and symptom control during the final 4 weeks, was sent to caregivers. For some of the questions, a scale from 1 (inadequate) to 10 (excellent) was used., Results: Of 1655 questionnaires, 605 were returned (36.6%) and evaluated. We found that 67.9% of the patients were taken care of at home for the last 4 weeks; 47.7% died at home, 22.6% died in hospitals, and 19.3% died in hospice facilities. Medical support was provided by general practitioners in 72.3% of cases, by physicians affiliated with a nursing home or hospice in 29.9%, and by general oncologists in 17%. Specialized neuro-oncologists were involved in 6%. The caregivers ranked the medical support with a mean of 7.2 (using a 10-point scale), nursing service with 8.1, and mental health support with 5.5. In 22.9% of cases, no support for the caregivers themselves was offered by medical institutions., Conclusions: Although these data reflect the caregivers' subjective views, they are useful in understanding and improving current patterns of care. While patients and their caregivers are supported mainly by neuro-oncologists for most of the disease phase, the end-of-life phase is managed predominantly by general practitioners and specialists in palliative care. Close cooperation between these specialties is necessary to meet the specific needs of glioma patients. more...

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. more...

Background: With poor prognosis and disabling symptomatology high-grade gliomas affect not only the patient but also the family., Purpose: The aim of this systematic review is to explore the experiences and needs of patients with a high-grade glioma and their family caregivers., Method: Based on literature search in six databases, sixteen qualitative studies, published between 2000 and 2010 and with mixed methodological quality, were included., Results: For both patients and their caregivers the diagnosis is marked by shock and recognition of death. For patients, coping with restriction seems to be most difficult to deal with. Especially loss of autonomy is hard. For caregivers, neurocognitive symptoms and personality changes irreversibly change the relationship with the patient leading to caregivers expressing a sense of total responsibility. The experience of being a caregiver is described by positive as well as negative feelings. Both patients and caregivers describe the need for hope, support and information., Conclusion: The review provides some relevant insight in the experiences and needs of patients with a high-grade glioma and their caregivers. The methodological limitations of the included studies, however, urge for more research to refine our understanding of patients' and caregivers' experiences and needs to better tune care to their needs., (Copyright © 2012 Elsevier Ltd. All rights reserved.) more...

This study sought the views of patients and their caregivers on their experience of being diagnosed with high grade glioma. Purposive sampling was used to recruit 19 patients and 21 caregivers from the medical oncology unit of a tertiary hospital. A semi-structured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data was analysed based on Grounded Theory and using the constant comparison method. This paper focuses on patient and carer perceptions of the initial communication about the diagnosis of high grade glioma and its prognosis. Themes identified included: (a) shock at hearing the diagnosis; (b) trying to understand and process prognostic information when still in shock; (c) the perception of hope being taken away; (d) individualizing prognostic information; and (e) clinicians' lack of communication skills. This study shows that the first communication of prognosis to patients with high grade glioma and their caregivers requires careful negotiation. It illustrates the inability of individuals to process detailed prognostic information when in a state of initial shock and distress. The importance of balancing honesty with hope in the communication of a poor prognosis is highlighted. We recommend that clinicians seek patient preferences for the amount and type of information they require and that prognostic information be individualized. Detailed discussions of prognosis should only take place with senior medical staff, or advanced trainees who have demonstrated acceptable communication skills. more...

Patients diagnosed with high-grade gliomas have a poor prognosis and limited life expectancy, and often experience rapid decline in function. Caring for a patient with high-grade glioma is particularly stressful because caregivers are faced not only with cancer-related caregiving issues, but also issues relating to caring for someone with cognitive impairment. This study aimed to articulate the experiences of family caregivers of people diagnosed with high-grade glioma and to describe their information and support needs. A grounded theory method was adopted. Twenty-one family caregivers of people with high-grade glioma were interviewed using a semi-structured interview guide. A constant comparison method of data analysis was employed. A central theme, A Time of Rapid Change and two sub-themes, Renegotiating Relationships and Learning to be a Caregiver, emerged to describe the experiences of participants. Caregiving was characterised by numerous role and life changes from the moment of diagnosis. Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma. more...

Purpose/objectives: To investigate the toxicity of temozolomide (TMZ) in patients with brain tumors and appropriate nursing interventions., Design: Explorative analysis of prospective data., Setting: A TMZ clinic led by a nurse practitioner (NP)., Sample: Group A (n = 71) received a standard dose of TMZ daily for five days 200 mg/m2 every four weeks; group B (n = 19) received a dose-intense schedule of TMZ daily for 21 days 75 mg/m2 every four weeks., Methods: Toxicities were scored according to National Cancer Institute Common Terminology Criteria, and results in the two groups were compared., Main Research Variables: Thrombopenia, neutropenia, and lymphopenia; nausea and vomiting; and NP interventions., Findings: Of observed toxicities during six cycles, grade 3-4 thrombopenia was seen most frequently in group A. Neutropenia and subsequent interventions occurred more frequently in group A than in group B. Subsequent interventions consisted of dose delays and reductions. When patients were treated for a longer duration of time with TMZ, grade 3-4 lymphopenia occurred significantly more often in group B, necessitating Pneumocystis carinii pneumonia prophylaxis., Conclusions: Degree of toxicity using a 5-day 200 mg/m2 or 21-day 75 mg/m2 schedule every four weeks was similar to that found in other studies., Implications for Nursing: Through awareness of toxicity in relation to knowledge of brain tumors, NPs can become more effective in active management of TMZ toxicity. more...

The diagnosis and management of high-grade glioma has profound effects on patients and their families. Guidance issued by the UK National Institute of Health and Clinical Excellence in 2006 highlighted the lack of good studies of palliative care for patients with this disease. We describe new studies published from 2000 to 2007. High-grade glioma is undoubtedly a challenging research area, and many studies are poorly defined and have small and biased samples. Nevertheless the data reveal this to be a heterogeneous group of patients with complex needs that differ from those of patients with other cancers. Improvements in care require a united input from neurology and neurosurgery, oncology, and palliative care. The main research priorities are the development and assessment of psychosocial or supportive interventions and the investigation of service provision of specialist palliative and end-of-life care, which have hitherto been neglected. more...

Background: Caring for a loved one with a malignant glioma can be a formidable responsibility. The guarded prognosis, side effects of treatments, and changes in brain function, personality and behaviour pose unique challenges in care provision by family members. It is rare that institutions provide educational programs for caregivers., Purpose: To evaluate the impact of providing information in an educational program to caregivers of patients diagnosed with a malignant glioma., Methods: A structured educational program for caregivers of brain tumour patients was developed based upon multidisciplinary expert opinion and caregiver feedback. Twenty-four caregiver participants were enrolled in the program. Knowledge was assessed before, immediately following, and four to six weeks following the program. Open-ended questions were used to explore the caregivers' experiences, as well as additional benefits derived from the program., Results: Knowledge scores on testing immediately after the program and four to six weeks following the program were statistically significantly improved from baseline testing, although there was a decline in scores four to six weeks after the program. These findings demonstrate effective knowledge transfer (recall of the information) immediately after the education program and four to six weeks later. Specific qualitative and quantitative data serve as a basis for understanding caregivers' needs and experiences. more...

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered. more...

Objective: Brain tumors, a cancer that affects the cortical processes, have a substantial social impact. Typically, malignant glioma is a brain tumor with a poor prognosis; few patients survive more than two years after diagnosis. In the last several years, different groups have documented how this disease affects a patient's quality of life. These findings have resulted in new ways for nurses to improve the care for these patients and their spouses. However, these initiatives have not been studied in a systematic way. This study investigates how patients with malignant glioma and their families respond to a special nurse, a nurse specifically instructed to address the needs of the patient and the patient's family., Methods: Sixteen patients and their next-of kin were included. At the time of diagnosis, the special nurse offered to serve as a resource to the patient and the patient's family. During the whole course of the disease, the nurse recorded her interactions with the patients and the patients' family. In addition, the spouses were interviewed after the patient's death. Data was analysed qualitatively with focus on tasks and relationships., Results: Four relationships between the special nurse and the family were detected: 1) a resource for the whole family; 2) a parallel resource within the family; 3) a resource for the next-of kin; and 4) a resource for the patient. Most of the patients and their families found this program beneficial. The nurse provided the patient and family with several functions. In some cases the family and nurse interaction developed into a closer relationship, a relationship based on the nurse's availability and concern for the patient's and family's welfare., Significance of Results: This close relationship underlines the importance of the nurse's professionalism and a systemic perspective for understanding the nurse's function within the milieu of a cancer patient's family. more...

The paths taken by each family in coming to terms with the dismal prognosis associated with brain stem glioma can be quite different. The case studies of 2 school-age girls diagnosed with a brain stem glioma within weeks of each other are presented. The multi-disciplinary team response to each family was individualized at each stage of diagnosis, treatment, and end-of-life care, as expected. The ultimate chronologic union of these 2 families as each child neared death was somewhat uncanny. The experience of each family, and their relationship with the team through this process, was an intense challenge and learning experience. more...

The aim of this study was to evaluate nurse-led telephone follow-up (NTF) for patients with high-grade glioma as an alternative to conventional clinic follow-up (CCF) and to assess patient satisfaction with this approach. Patients who were completing primary therapy for high-grade glioma and were suitable for CCF were offered the alternative of nurse-led telephone follow-up. NTF was arranged by the nurse at mutually agreed times. Assessment was by open discussion and a semistructured questionnaire, together with the Barthel Activities of Daily Living Index. Formal medical assessment in the clinic was arranged at 4-month intervals or earlier if indicated. Twenty-two patients were asked to complete a satisfaction questionnaire. Between February 1996 and October 1997, 43 patients with high-grade glioma, one with primitive neuroectodermal tumour and one with oligoastrocytoma agreed to be monitored by NTF. Their median survival from diagnosis was 16 months (95% confidence interval 13-23 months). At the time of analysis, the median time of follow-up by the telephone clinic was 6 months (range 2-21), with symptomatic progressive disease the reason for discontinuation of NTF in all patients. Two-hundred and fifty-four telephone calls were made, of which 234 were routine and 20 non-routine, being initiated by the patients or their carers. NTF was considered as a sufficient replacement for CCF during the stable phase of the disease. There were 41 unscheduled clinic visits, of which 31 were at the time of progression and usually initiated at NTF. The majority of unplanned visits were due to a change in symptoms and would not have been avoided with CCF carried out at the same time intervals. Patient satisfaction was high, with a median satisfaction score of 9, (range 3.6-10 ) on a scale of 0-10. NTF provides an alternative approach to conventional hospital attendance and moves the emphasis away from cancer surveillance to a more patient centred supportive model. It can be carried out without apparent detriment to the patient and is associated with high satisfaction rating. more...

Historically, the prognosis for a child diagnosed with a brainstem tumor has been bleak. The development of magnetic resonance imaging (MRI) has allowed for detailed visualization of tumors within the brainstem. This knowledge combined with the clinical history and neurological examination allows subcategorization of such tumors and delineation of children who might benefit from surgery. Surgical candidates include children with long clinical histories, focal neurological deficits and focal, cystic, exophytic or cervico-medullary tumors on the MRI scan. All children have the potential for multiple cranial nerve abnormalities, extremity weakness and swallowing and breathing difficulties. Nursing care of patients with brainstem tumors is complex and challenging. more...

The diagnosis of a malignant brain tumor can thrust a patient and family onto an emotional roller coaster. This crisis can be better managed with the help of a sensitive interdisciplinary team comprised of nurses, physicians, clinical social workers and other health care professionals. Healthcare personnel can help to provide information, support and coping strategies. Nursing and family support groups enable all involved to survive the personal and professional losses they experience. more...

The nursing care of the child with a brain stem tumor focuses on supporting the family and the child's adaptation to the physical and emotional problems of an illness with a variable and often fatal course. With the advent of magnetic resonance imaging and stereotaxic biopsy, a more accurate assessment of tumor type, location, and size can be made. Advances in surgery, radiotherapy, and multidrug chemotherapy have affected the course of brain stem tumors even though outcome may remain the same. more...

Malignant glioma is a devastating disease which presents a clinical challenge to physicians and neuroscience nurses. It carries a dismal prognosis, with a median survival of only nine months following application of conventional therapies of surgical resection, radiotherapy and chemotherapy. Hyperthermia is the application of sufficient heat to raise the temperature in a volume of tumor to cytocidal levels. Patient tolerance and response to volumetric interstitial hyperthermia treatment in this clinical study of over 40 patients has been extremely encouraging. Hyperthermia, as part of multi-modality treatment of brain tumors, presents a change in the nursing management of this patient population. The neuroscience nurse plays a crucial role in linking clinical observations to decisions of patient management and treatment planning. Because hyperthermia is a new treatment modality, nurses, patients and families require additional education and extended support during therapy. more...