Nursing Guide to Management of Major Symptoms in Patients with Malignant Glioma.

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.

End-of-Life Care for Patients with Glioma.

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.

Toward Precision Medicine: Promising Areas of Research in Glioma.

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.

The Role of Survivorship Care for Patients with Glioma.

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_Care_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.

Approved Treatments for Patients with Recurrent High-grade Gliomas.

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.

Coping strategies and quality of life: a longitudinal study of high-grade glioma patient-caregiver dyads.

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 (ß = - 0.322; p = 0.03) when the patient mobilized the social support strategy at baseline, but was higher(ß = 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; ß =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.

Bereaved Caregivers to Patients With High-Grade Glioma: A Qualitative Explorative Study.

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.

Prognostic awareness and communication preferences among caregivers of patients with malignant glioma.

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.

Caregivers' quality of life and psychological health in response to functional, cognitive, neuropsychiatric and social deficits of patients with brain tumour: protocol for a cross-sectional study.

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.

Emotional concerns and coping strategies in Low Grade Glioma patients and reliability of their caregivers in reporting these concerns: Findings from a cross-sectional study.

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.

Protocol for the Care-IS Trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG).

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.

Daily Life Experiences of Patients With a High-Grade Glioma and Their Caregivers: A Longitudinal Exploration of Rehabilitation and Supportive Care Needs.

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.

The feasibility of a brain tumour website.

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.

End-of-life caregivers' perception of medical and psychological support during the final weeks of glioma patients: a questionnaire-based survey.

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.

The impact of a high-grade glioma on everyday life: a systematic review from the patient's and caregiver's perspective.

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.

Enhancing quality of life and mastery of informal caregivers of high-grade glioma patients: a randomized controlled trial.

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.

Patient and caregiver perceptions of communication of prognosis in high grade glioma.

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.