SP-03 * CARE OF THE CAREGIVER: ENHANCING NEURO-ONCOLOGY PATIENT CARE

Abstract

UCSF Neuro Oncology has developed a formalized program to identify and meet the needs of caregivers of brain tumor patients. To date the program has targeted care to three groups of caregivers, those of new patients seen at clinic, caregivers of patients with newly diagnosed glioblastoma, and caregivers of patients deemed to be at high risk, either by an interaction with the healthcare provider, or because of the phase in the illness trajectory. Caregiver assistance has been offered at specific points in the first 4 months of illness to 30 caregivers of patients with newly diagnosed glioblastoma, 13 of which received care. 13 caregivers reported no needs over the first 4 months of illness. Although various needs were identified, over half had concerns with financial issues and disability as well as need for emotional support around adjusting to the diagnosis, role changes, and care demands. In addition we have offered varying levels of care to 70 caregivers of patients identified at high risk for distress. Similar themes were identified in this group, with over 31 caregivers receiving emotional support, 22 needing help with financial and disability concerns and 15 needing various kinds of information about the disease, treatment, and resources available. Challenges encountered include providing the right information at the right time, where to house caregiver documentation, measuring outcomes with minimal extra burden to the caregiver, and blurred lines of service between care of the patient and of the caregiver. Future directions include offering psycho-educational support groups for caregivers and a program designed to reach caregivers at time of surgery to provide information and basic caregiver skills in efforts to boost confidence and improve efficacy as well as bridge the gap of interactions with the health care team between time of discharge and first visit to the clinic.