INTRODUCTION:
Both Primary Brain Tumour (PBT) patients and their carers experience significant psychosocial distress (PSD) throughout the complex care trajectory. This study aimed to compare longitudinal PSD levels between High Grade Glioma (HGG) and Low Grade Glioma (LGG) patients as well as their carers.
METHOD:
The study population (n=58) comprised newly diagnosed (n=49) and existing (n=9) PBT patients and carers (n=29) from May 2012-August 2013. PSD was measured via the NCCN Distress Thermometer (DT)[score 0=none and 10=extreme], at initial diagnosis and then first recurrence in patients and carers. The neuro-oncology care coordinator (NOCC) administered the DT and performed an initial needs assessment, ensuring patients and/or carers with DT score>4 were referred to relevant Allied Health/community services. Averaged DT scores amongst groups are reported.
RESULTS:
There were 49 HGG (n=38 GBM), 9 LGG patients and 29 carers, with 134 DT scores collected. HGG patients had DT=4 at diagnosis compared to DT=6 at recurrence, compared with DT=2 (diagnosis) and DT=4 (recurrence) respectively for LGG patients. Interestingly, comparing the HGG and LGG groups, carer PSD was higher- DT=5 in HGG versus DT=4 in LGG), versus patient scores: HGG - DT=4 versus LGG DT=2 at diagnosis. At the time of recurrence, carer DT=8 for both HGG and LGG groups, versus DT=4 for LGG and DT=6 for HGG patients.
CONCLUSIONS:
Psychosocial distress remains elevated throughout the treatment journey in glioma patients. Furthermore, carer distress may even exceed that of patients reflecting high symptom burden and complex needs. This highlights the role of systematic psychosocial assessment and timely care coordination to ensure that complex needs are detected and addressed.