Carers of patients with high-grade glioma report high levels of distress, unmet needs, and psychological morbidity during patient chemoradiotherapy

Abstract

Background. Few studies have explored the unmet needs of carers of people with high-grade glioma. We aimed to determine carers' levels of distress during treatment, understand their support needs and explore predictors of distress. Methods. Carers of people with high-grade glioma undergoing chemoradiotherapy were recruited to this prospective, longitudinal cohort study. Carers completed the validated Supportive Care Needs Survey, Brain Tumour Specific Supportive Care Needs Scale, Distress Thermometer (DT), and General Health Questionnaire (GHQ-12). Questionnaires were administered during patients' chemoradiotherapy and 3 and 6 months later. Results.We recruited 118 carers who were mainly female (72%) and caring for spouse (82%). The mean age was 53 years (SD = 13.6; range, 21-89). Thirty-one percent of carers reported moderate distress (DT score 5-6/10) and 31% reported extreme distress (score 7- 10/10) during combined chemoradiotherapy. Carer distress was associated with adverse GHQ scores (r = 0.61, P