Supportive care of patients diagnosed with high grade glioma and their carers in Australia

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Halkett, Georgia KB
Berg, Melissa N
Daudu, Davina
Dhillon, Haryana M
Koh, Eng-Siew
Ownsworth, Tamara
Lobb, Elizabeth
Phillips, Jane
Langbecker, Danette
Agar, Meera
Hovey, Elizabeth
Moorin, Rachael
Nowak, Anna K
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Purpose This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways.

Methods This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups.

Results 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93–100%) and mental health professionals (60–85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects.

Conclusions While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.

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Journal of Neuro-Oncology
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© The Author(s) 2022. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit
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Halkett, GKB; Berg, MN; Daudu, D; Dhillon, HM; Koh, E-S; Ownsworth, T; Lobb, E; Phillips, J; Langbecker, D; Agar, M; Hovey, E; Moorin, R; Nowak, AK, Supportive care of patients diagnosed with high grade glioma and their carers in Australia, Journal of Neuro-Oncology, 2022, 157 (3), pp. 475-485