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

Jennifer Philip; Anna Collins; Stacey Panozzo; Jane Staker; Michael Murphy

doi:10.1093/nop/npz032

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

Neurooncol Pract. 2020 Jan;7(1):103-110. doi: 10.1093/nop/npz032. Epub 2019 Jul 3.

Authors

Jennifer Philip^{1

2

3}, Anna Collins^{1

2}, Stacey Panozzo², Jane Staker⁴, Michael Murphy⁴

Affiliations

¹ Department of Medicine, Eastern Hill Campus, University of Melbourne, VIC, Australia.
² VCCC Palliative Medicine Research Group, St Vincent's Hospital, Melbourne, VIC, Australia.
³ Palliative Care Service, Royal Melbourne Hospital, VIC, Australia.
⁴ Department of Neurosurgery, St Vincent's Hospital, Melbourne, VIC, Australia.

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.

Keywords: caregivers; high-grade glioma; mixed-methods research; palliative care; psychosocial screening; supportive care.

© The Author(s) 2019. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.