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

• Published in: Journal of neuro-oncology Vol. 157; no. 3; pp. 475 - 485
• Main Authors: Halkett, Georgia K. B., 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.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01-05-2022; Springer Nature B.V
• Subjects: Australia; Brain cancer; Caregivers - psychology; Clinical Study; Clinical trials; Cross-Sectional Studies; Glioma; Glioma - psychology; Glioma - therapy; Humans; Medical personnel; Medicine; Medicine & Public Health; Mental disorders; Mental health; Neurology; Oncology; Palliative Care; Patients; Primary care; Radiation; Rehabilitation; Speech; Speech therapists; Australia; Carers; High grade glioma; Supportive care; Multidisciplinary team; Brain tumor cancer health professional psychosocial support; Patients; Online survey
• ISSN: 0167-594X; 1573-7373
• DOI: 10.1007/s11060-022-03991-z

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.