Identifying the needs of brain tumor patients and their caregivers

The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers’ questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were “very important” but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients’ lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value < 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers’ highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients’ treatment process

Creating a caregiver program in neuro-oncology

BackgroundNeuro-oncology caregivers face unique challenges. Caring for a patient who has a catastrophic, life-threatening diagnosis combined with progressive neurological decline can produce great distress. Experts agree that a formalized plan of care to address the needs of the neuro-oncology caregiver is needed.MethodsIn 2013, the Division of Neuro-Oncology at the University of California, San Francisco initiated a program designed to provide additional services to address the needs of the neuro-oncology caregiver. Records have been kept outlining program development, the caregivers seen, their identified needs, and services provided.ResultsFrom October 2013 through August 2015 staff met with 334 "new to clinic" caregivers, 90 of whom were caring for patients with newly diagnosed glioblastoma. One hundred ninety-eight caregivers were deemed at high risk for distress due to transitions in patient care that were occurring. One hundred forty-nine caregivers of former patients received bereavement services for up to 6 months. The areas of highest need were emotional support and advocacy issues. The number of caregiver needs increased as patients moved along the disease trajectory. The program was able to identify resources that were lacking. Dedicated staff allowed for improvement in the kinds of caregiver-specific support services offered.ConclusionDedicated caregiver staff allows for developing relationships with caregivers across the disease trajectory and appears to be important in being able to offer individualized assessments and tailored care plans. Evaluation of caregiver and patient outcomes is the next step in understanding program effectiveness

Quality of life in adults with brain tumors: Current knowledge and future directions

Quality of life is an important area of clinical neurooncology that is increasingly relevant as survivorship increases and as patients experience potential morbidities associated with new therapies. This review of quality-of-life studies in the brain tumor population aims to summarize what is currently known about quality of life in patients with both low-grade and high-grade tumors and suggest how we may use this knowledge to direct future research. To date, reports on quality of life have been primarily qualitative and focused on specific symptoms such as fatigue, sleep disorders, and cognitive dysfunction, as well as some symptom clusters. However, the increasing interest in exploring quality of life as a primary end point for cancer therapy has established a need for prospective, controlled studies to assess baseline and serial quality-of-life parameters in brain tumor patients in order to plan and evaluate appropriate and timely interventions for their symptoms