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

Abstract

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.

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives

“…Although clinical care guidelines for high‐grade glioma strongly advocate for care coordination services, 22 neuro‐oncology care coordinators are not accessible in all settings 33,34 . Further, HPs in this study recognized the need for people with lower‐grade glioma and benign brain tumor to receive coordinated care including access to psychosocial support across the illness trajectory.…”

“…32 Our findings highlight HPs in these roles are often not prepared and Although clinical care guidelines for high-grade glioma strongly advocate for care coordination services, 22 neuro-oncology care coordinators are not accessible in all settings. 33,34 Further, HPs in this study recognized the need for people with lower-grade glioma and benign brain tumor to receive coordinated care including access to psychosocial support across the illness trajectory. Although gaps in access to psycho-oncology services for PwBT have previously been identified, 21,26 variations in psychosocial care pathways according to tumor type (Figure 1) is an important novel finding.…”

Management and outcomes of glioblastoma: 20‐year experience in a single Australian institution

“…There are potentially other factors, beyond the evaluated changes in treatment patterns, that may be associated with the improved outcomes observed over the study period. It is important to note the increasing recognition of the role of palliative care and supportive care services in the management GBM, 29,30 which is now incorporated in the Optimal Care Pathway for GBM, 31 and there is evidence that early integration of palliative care may be associated with improved survival in patients with advanced cancers 32 …”

“…15,28 There are potentially other factors, beyond the evaluated changes in treatment patterns, that may be associated with the improved outcomes observed over the study period. It is important to note the increasing recognition of the role of palliative care and supportive care services in the management GBM, 29,30 which is now incorporated in the Optimal Care Pathway for GBM, 31 and there is evidence that early integration of palliative care may be associated with improved survival in patients with advanced cancers. 32 One of the strengths of the study was that the OS outcomes in our study were obtained through routine data linkage with the Victorian Cancer Registry (VCR) at regular interval, which allowed us to accurately capture OS data, even when patients were no longer followed in our department post-treatment.…”

Determining the Research Priorities for Adult Primary Brain Tumours in Australia and New Zealand: A Delphi Study with Consumers, Health Professionals, and Researchers

“…Our team has conducted studies to determine the unmet needs of patients diagnosed with high-grade glioma [ 48 ] and their carers [ 49 , 50 ] and also developed an intervention to assist in carer preparedness following diagnosis [ 51 , 52 ]. Additionally, work is being conducted in Australia to understand current support services available to patients [ 53 , 54 ] and to develop and test psychosocial interventions that provide additional support to patients [ 55 ]. Internationally several studies have been conducted on patient and carer needs and interventions to support them [ 56 , 57 , 58 , 59 ].…”