Introduction
brain cancer, anxiety, IDH, cancer, HGG, depression, oligodendrogliomas, ill, neurological deficits, glioblastoma, cognitive decline, astrocytomas, Brain cancer
BRAIN CANCER, CANCER, HIGH-GRADE GLIOMA, DISEASE, MUTANT, ANAPLASTIC ASTROCYTOMAS, OLIGODENDROGLIOMAS, SECONDARY, GLIOBLASTOMA, ASTROCYTOMAS
Brain cancer in Australia is the sixth leading cause of cancer burden with a 22% five-year relative survival rate [High-grade glioma (HGG) includes grade III anaplastic astrocytomas, oligodendrogliomas and glioblastoma (grade IV). Patients diagnosed with astrocytomas and oligodendrogliomas, IDH mutant, grade 3, may live greater than 5 years [Despite different prognoses, all HGG diagnoses are debilitating. Adults diagnosed with HGG experience functional and neurological deficits, cognitive decline, and behavioural and personality changes [Due to the progressive nature of HGG, carers rapidly transition into a carer role soon after diagnosis to manage the patients’ cognitive, personality, and functional changes and help them maintain their independent activities of daily living [Three systematic reviews have been conducted to explore supportive interventions available for “family members of seriously ill patients in hospital” [Few randomised controlled trials (RCTs) or smaller single-arm studies have been conducted to improve support provided to carers of patients with brain cancer [Leveraging this work, our Care-IS RCT aimed to deliver a nurse-led intervention to carers of patients with HGG to improve their preparedness to care and reduce distress. We hypothesised carers who receive the intervention will feel more prepared for caring and experience less psychological distress as the patient’s disease progresses. We also proposed that improving carer preparedness and reducing their distress would improve patient outcomes including patient hospital admissions and length of stay. Secondary outcomes included anxiety, depression, quality of life, carer competence, and strain. We also collected data on carer unmet needs and healthcare resource utilization and costs which will be reported elsewhere. Here we report the primary endpoints: carer preparedness and carer distress and the following secondary outcomes: anxiety, depression, quality of life, carer competence and strain.