Do family health conversations impact patients with glioblastoma multiforme and their family members?

AIMS AND OBJECTIVES: To assess the impact of family health conversations (FamHC) as a supplement to conventional care on health-related quality of life (HRQoL), family functioning (FFSS) and family hardiness or resilience (FHI) 4 and 14 weeks postoperatively among patients with glioblastoma multiforme and their family members. BACKGROUND: There is a lack of knowledge about the efficiency of FamHC among families experiencing glioblastoma multiforme. DESIGN: A quasi-experimental pre- and post-test design adhering to the STROBE (Strengthening the reporting of observational studies in epidemiology) guidelines for case-control studies. Patients and family members were included consecutively in the pretest period from November 2013-December 2014 for the control group (offered traditional care only), and in the post-test period from January 2015-December 2015 for the intervention group (offered traditional care and FamHC). For both groups, 4 and 14 weeks postoperative measurement were obtained. METHODS: Differences in outcomes were assessed using a difference-in-difference regression analysis approach measuring difference across pre and post groups and across 4 and 14 weeks measurements. RESULTS: The study does not reveal significant effects of FamHC (all p-values larger than 0.05) as measured by the three instruments WHOQOL-BREF, FFSS and FHI. CONCLUSIONS: The present study was not able to show significant effects of FamHC. However, it cannot be left out that the intervention might be helpful and supportive at a later state of the illness trajectory. RELEVANCE FOR CLINICAL PRACTICE: The study adds to the growing evidence-based knowledge on FamHC by questioning their potential use in different cultural contexts among families experiencing critical illness. Oncological nurses need to adapt this information to support their daily care for the patients and their close relatives. For future studies, it is recommended that the families themselves choose when the conversations should take place during the course of the illness.

Tumor Treating Fields Technology: Alternating Electric Field Therapy for the Treatment of Solid Tumors.

OBJECTIVE: To provide an overview of Tumor Treating Fields (TTFields) and the Optune device in the treatment of glioblastoma multiforme as well as discuss the evolution of TTFields technology for the treatment of different tumor types. DATA SOURCES: Peer reviewed publications, proceedings, and Internet-based resources. CONCLUSION: TTFields represent a unique technological modality for the effective treatment of glioblastoma multiforme and potentially other solid tumors. Oncology nurses are situated to play important roles as educators and advocates for patients and caregivers on the adherent use and management of this new and evolving treatment technology. IMPLICATIONS FOR NURSING PRACTICE: The increasing use of TTFields in cancer treatment draws attention to the expanding role for oncology nurses in the administration of this unique therapy. As an educator and advocate, the oncology nurse guides the cancer patient and caregiver through understanding the mechanism of action, initiation of TTFields treatment, and adjusting to the daily challenges of treatment administration, management of side effects, and optimizing compliance to treatment adherence to maximize treatment outcomes.

[The nurse and management of glioblastoma]. / Le rôle de l'infirmier référent en neuro-oncologie.

Lead nurses in neuro-oncology support patients with glioblastoma and their family from the time of diagnosis. They work closely with all health professionals practising in hospitals and in the home. They coordinate patients' care pathways, from the diagnosis consultation to their death.

[Nursing strategy in the face of glioblastoma]. / Stratégie soignante face au glioblastome.

Hospitalisation forces patients with glioblastoma and their family to face a new life made up of numerous constraints and uncertainties. In this context of anxiety, nursing care is based on global support which combines technical, organisational and relational skills.

[Glioblastoma in 2017]. / Les glioblastomes en 2017.

Glioblastomas are serious tumours of the central nervous system. Recurrence is systematic and prognosis poor. Radiotherapy and chemotherapy follow surgery, when surgery is possible, to lengthen survival, while preserving quality of life as much as possible. In this respect, symptomatic treatments and supportive care are necessary.

[Glioblastoma and nursing care in neurosurgery]. / Glioblastome et soins infirmiers en neurochirurgie.

Nurses in neurosurgical departments play a critical role as they are involved in the first stages of the care pathway of patients with glioblastoma. Indeed, surgery enables a definitive histopathological diagnosis to be established and the size of the tumour to be significantly reduced, thereby improving the prognosis.

[Glioblastoma, innovations in surgery]. / Glioblastome, des innovations en chirurgie.

One of the innovative principles in glioblastoma surgery consists in making the tumour fluorescent in order for it to be more easily visualised during the procedure. 5-aminolevulinic acid (5-ALA) undergoes an enzyme transformation, turning into another molecule, protoporphyrine IX (PPIX) whose property is fluorescence. It emits red light when it is stimulated by blue light.

Pseudoprogression: Patient experience and nursing in uncertainty.

Glioblastoma Multiforme (GBM) is the most common primary brain malignancy in humans and has a limited survival (median of 14.6 months). The goal of treatment is supportive rather than curative. Patients with a GBM struggle with uncertainty related to the illness trajectory. This uncertainty is compounded when possible progression is noted on imaging. Pseudoprogression (PsP) is an early treatment-related effect where there are apparent imaging changes suggesting progression, which then improve or stabilize through time. This paper provides a review of the literature on PsP in patients with high-grade gliomas. Insights in the patient and family experience of PsP will be informed by Mishel's Uncertainty in Illness Theory, research on patients' and families' neuro-oncology experience, and the author's nursing practice. Nursing implications will be proposed.

Validation of the National Institutes of Health Patient-Reported Outcomes Measurement Information System Survey as a Quality-of-Life Instrument for Patients with Malignant Brain Tumors and Their Caregivers.

At present there is a lack of well-validated surveys used to measure quality of life in patients with malignant brain tumors and their caregivers. The main objective of this pilot study was to validate the National Institutes of Health Patient-Reported Outcomes Measurement Information System (NIH PROMIS) survey for use as a quality-of-life measure in this population. This article presents the rationale for using the NIH PROMIS instrument as a quality-of-life measure for patients with malignant brain tumors and their caregivers.

Home palliative care and end of life issues in glioblastoma multiforme: results and comments from a homogeneous cohort of patients.

OBJECT: Glioblastoma multiforme (GBM) is a rare tumor whose prognosis has remained poor over the years despite innovative radio- and chemotherapies, and important technical advances in neurosurgery such as intraoperative imaging, fluorescence, Cavitron ultrasonic surgical aspirator, and neuronavigation. Particular attention has been dedicated in the last years to the end of life (EOL) period in cancer patients for both ethical and socioeconomic issues. Good palliative care at home avoids improper and expensive hospitalizations, and helps and trains families, caregivers, and patients in facing a difficult situation. METHODS: In 2012-2013 the authors' group cared for 197 patients with brain tumors. Of these there were 122 with GBMs: 64 died and 58 are still receiving assistance. The clinical conditions are periodically evaluated with the following scales: Barthel Index, Karnofsky Performance Scale, and Mini-Mental State Examination. Home care staff includes 2 neurologists, 5 nurses, 2 psychologists, 3 rehabilitation therapists, and 1 social worker. The intensity of care changes at the different stages of disease, ranging from low to medium levels of intensity at the progression stage (more than 1 access weekly) to high levels of intensity at the EOL stage (at least 3 accesses weekly). Control MRI studies are obtained every 3 months before terminal progression. RESULTS: Overall in this sample of patients there were 2838 home visits and 11,714 days of assistance. Thirty-four patients (14 female and 20 male) died at home (53.1%); 22 (13 female and 9 male) at the hospice (34.4%); and 8 (4 female and 4 male) at the hospital (12.5%). A positive impact on caregivers for home assistance was recorded in 97% of cases, for nursing in 95%, communication in 90%, rehabilitation at home in 92%, and social work help in 85%. Also, 72% had an improvement in their quality of life scores due to rehabilitation. End of life palliative sedation with midazolam was necessary in 11% of cases to obtain good control of symptoms such as uncontrolled delirium, agitation, death rattle, or refractory seizures. Intramuscular phenobarbital is the authors' drug of choice for the severe seizures that occurred in 30% of cases. The reduction of steroid dosage is also used to decrease wakefulness. Steroids were withdrawn in 45% of patients dying at home, mild hydration was done in 87%, and tube feeding in 13%. The decision-making process at the EOL stage is time consuming, but the degree of distress of the family is inversely proportional to the extent of the preparatory period. CONCLUSIONS: A previous paper showed the positive cost-effectiveness of home assistance for a larger group of patients dealing with any kind of malignant brain tumors. The same is enhanced for patients with GBM. This requires a well-trained neuro-oncology team that manages neurological deterioration, clinical complications, rehabilitation, and psychosocial problems with a multidisciplinary approach.

Awareness of psychological and relationship problems amongst brain tumour patients and its association with carer distress.

OBJECTIVE: The aim of this research was to investigate if brain tumour patients underestimate the severity of their impairments and the impact of this behaviour on carer distress . This study also aimed to identify the support services that patients and carers experiencing distress would find most beneficial. METHOD: A total of 32 post-surgery brain tumour patients, their carers, and a control group of 29 patients following surgery to extra-cerebral areas and their carers were recruited from outpatient clinics. Patients and carers rated the patient's psychological well-being and the impact of a range of changes since diagnosis/surgery. Patients and carers also rated their own level of distress and the support services they would find most beneficial. RESULTS: When compared with the control group, brain tumour patients were more likely to underestimate their psychological problems (p < 0.005) and the negative impact of changes to their emotional function (p < 0.05), interpersonal relationships (p < 0.05), cognition (p < 0.05) and coping skills (p<0.05). A multiple regression analysis showed that underestimation of psychological and interpersonal problems by brain tumour patients explained 35% of the variance in their carer's anxiety. CONCLUSION: The finding of reduced awareness or denial in brain tumour patients and its contribution to increased carer anxiety highlights the need for therapeutic interventions, which improve patient insight/denial and encourage patient and carer communication.

Glioblastoma multiforme: enhancing survival and quality of life.

A diagnosis of a malignant brain tumor is devastating to patients and their families. The patients' inevitable loss of independence, which can occur suddenly or gradually, is tragic, and the eventual complete dependence can be overwhelming to the family and caregivers. Glioblastoma multiforme (GBM) is the most common type of primary malignant brain tumor in adults and is associated with a disproportionately high mortality rate. The highly malignant tumor grows rapidly and has a tendency to recur through treatment. The brain itself presents a multitude of barriers to treatment, such as tumor location, accessibility for surgery, and the blood-brain barrier's natural protection. Despite access to optimal multimodality treatment, patients diagnosed with GBM have a low survival rate. Patients and families need emotional and practical support throughout the continuum of this devastating disease. Astute neurologic assessment skills and immediate and appropriate interventions are required to maintain the patient's functional status. This article provides an overview of the treatment of GBM and reviews how oncology nurses can intervene to positively improve the quality of life of patients and their families.

Experiences of the relatives of patients undergoing cranial surgery for a brain tumor: a descriptive qualitative study.

The functional changes that develop because of neurological sequelae in patients with a brain tumor have a negative effect on daily activities and self-care. This situation in turn has a negative effect on the lives of the patients' relatives and increases their work load. We interviewed 10 relatives of patients who had undergone cranial surgery for a brain tumor as part of a descriptive qualitative study and asked them to describe their experiences during the perioperative period and home care. The data obtained from the patients' relatives were evaluated using Colaizzi's analysis method and divided into three categories and eight themes: (a) personal feelings (first reactions, decision for surgery, first meeting with the patient after surgery, ambiguity), (b) management of the changes (management of the side effects of the tumor, management of role and behavioral changes, management of care at home, social support), and (c) need for knowledge about managing the disease process. We found that brain tumor surgery can be more frightening for patients and their relatives than other surgical interventions. Also, because the patient requires prolonged postoperative care, the patient's family plays an important role at every stage of the patient's treatment and care.

Integrative therapies in hospice and home health: introduction and adoption.

Integrative therapies comprise a variety of nonpharmacologic methods that provide pain and symptom management. These therapies are increasingly gaining acceptance in the healthcare community as complementary to traditional treatments for pain. This article details the introduction, scope, and challenges healthcare organizations face when incorporating integrative therapies into their care plans.

Psychosocial and supportive-care needs in high-grade glioma.

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.

Spinal metastasis in glioblastoma multiforme: a case study.

Glioblastoma multiforme (GBM) is the most common primary malignant brain tumor. Spinal metastasis is rare. However, as local control of the primary tumor improves, metastatic disease is increasingly possible. The neuroscience nurse plays an instrumental role in caring for patients with GBM, developing a plan of care based on each patient's needs and outcomes.