Mapping the nature of distress raised by patients with high-grade glioma and their family caregivers: a descriptive longitudinal study

Abstract

Abstract Background Few supportive and palliative care interventions have been described for people with high-grade glioma (HGG) and their caregivers. A structured intervention, I-CoPE, which includes regular screening of patients’ and caregivers’ needs, was delivered as a pilot study in a tertiary neuro-oncological unit. This study prospectively described the severity and content of key concerns raised by patients and their caregivers in the 3 months following a diagnosis of HGG. Methods Consecutive patients and caregivers were screened for distress longitudinally using the Distress Thermometer at 3 time points. Exploration of the issues raised during screening was undertaken by the care coordinator and the issues documented. This documentation was subsequently audited to map patterns and nature of distress. The key reasons underlying distress and responses offered were grouped thematically and summarized using descriptive statistics. Results Thirty-two patients and 31 caregivers were recruited and underwent screening. At diagnosis, 87% of caregivers (n = 27) and 60% of patients (n = 19) reported distress scores meeting clinical significance. The predominant concerns reported by patients during screening related to existential issues such as fear of dying, whereas caregivers were more focused on practical caring responsibilities. Over time, the reasons for distress changed to include more physical health concerns for patients and more psychological concerns for caregivers. Conclusions This prospective longitudinal descriptive study revealed that following a new diagnosis of HGG, patients and caregivers had changing needs for support and fluctuating distress, mirroring the illness trajectory. Palliative care needs were apparent from diagnosis, and early integration of palliative care should be considered.