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

Abstract

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