Identification of challenges faced by caregivers of patients with newly diagnosed gliomas

Abstract OBJECTIVE Describe the most common and challenging issues facing caregivers of patients with newly diagnosed gliomas. BACKGROUND Despite growing evidence that caregivers of brain cancer patients have high burden, there are no studies on what specific aspects of caregiving are most challenging. Understanding these specifics can inform better approaches to support them. METHODS Prospective study of caregivers of patients with newly diagnosed gliomas (glioblastomas, anaplastic astrocytomas, and low-grade gliomas). Caregivers (n=57 at baseline) used free-text fields to report the most challenging aspects of caregiving at baseline, 3 months, 6 months, and 12 months after diagnosis. Responses were grouped into categories for analyses and examined utilizing the Model to Guide Patient and Family Care. RESULTS Caregiver participants included spouses (n=34), children (n=12), and others (n=11) and the majority of tumors were high-grade gliomas. The most common challenges at each time point were coping with diagnosis and associated mortality and uncertainty (32% at baseline), providing hands-on care (27% at 3 months), dealing with the patient’s emotions (33% at 6 months), and providing hands-on care, witnessing cognitive/behavioral changes, and seeing physical deficits (each 30% at 12 months). Psychological challenges such as dealing with emotions, coping with the diagnosis, or witnessing cognitive/behavioral changes were common across all time points. Social challenges such as communication difficulties and shifting relationships and family dynamics were less common. At baseline, coping with the new diagnosis was most challenging for caregivers, whereas at 12-months, the patients’ cognitive, behavioral, emotional, and physical difficulties became more pronounced resulting in the need for more hands-on care. The data was limited by dropouts, particularly at 12-months(n=20). CONCLUSION Caregivers of glioma patients experience challenges that evolve in the 12 months following diagnosis. These results provide a starting point to better screen caregivers for distress and develop targeted interventions to improve caregivers’ quality of life.