Long-term wellbeing and neurocognitive functioning of diffuse low-grade glioma patients and their caregivers: A longitudinal study spanning two decades

Abstract

Background While patients with diffuse low-grade glioma (LGG) often survive for years, there is a risk of tumour progression which may impact on patients’ long-term health-related quality of life (HRQOL) and neurocognitive functioning (NCF). We present a follow-up of LGG patients and their informal caregivers (T3) who took part in our previous HRQOL investigations (T1, M=7 and T2 M=13 years after diagnosis). Methods Participants completed HRQOL (SF-36; EORTC-BN20), fatigue (Checklist Individual Strength (CIS)), and depression (Center for Epidemiological Studies-Depression (CES-D)) questionnaires and underwent NCF assessments. T3 scores were compared with matched controls. Change over time (T1-T2-T3) on group and participant level were assessed. Where available, histology of the initial tumour was revised and immunohistochemical staining for IDH1 R132H mutant protein was performed. Results Thirty patients and nineteen caregivers participated. Of N=11 with tissue available, 3 patients had confirmed diffuse LGG. At T3, patients (M=26 years after diagnosis) had HRQOL and NCF similar to, or better than controls, yet 23.3% and 53.3% scored above the cut-off for depression (≥16 CES-D) and fatigue (≥35 CIS), respectively. Caregivers’ HRQOL was similar to controls, but reported high rates of fatigue (63.2%). Over time, patients’ mental health improved (p<.05). Minimal detectable change in HRQOL over time was observed in individual patients (30% improvement; 23.3% decline; 20% both improvement and decline) with 23.3% remaining stable. NCF remained stable or improved in 82.8% of patients. Conclusions While HRQOL and NCF do not appear greatly impacted during long-term survivorship in LGG, depressive symptoms and fatigue are persistent.

Long-term neurocognitive function and quality of life after multimodal therapy in adult glioma patients: a prospective long-term follow-up

“…The follow-up [ 23 ] suggested that around 50% of surviving patients having received RT as primary treatment developed cognitive difficulties even if treated with fractions < 2 Gy. In line with relative stable cognition in the long-term in other studies [ 6 , 24 – 26 ], a most recent paper on this population demonstrated that no further cognitive decline was detectable within the next 14 years of follow-up [ 27 ].…”

High costs, low quality of life, reduced survival, and room for improving treatment: an analysis of burden and unmet needs in glioma

“…Glioma affects patients’ functional status and HRQoL negatively, due to disease- and therapy-related symptoms such as neurocognitive deficits, including visual disorders and communication deficits, disturbed sleep, fatigue, drowsiness, itchy skin, and bladder control issues, and due to associated conditions such as depression and anxiety ( Table 1 ) ( 3 , 46 – 49 , 66 ). Concerns about HRQoL are the main factor in treatment decisions for up to 81% of patients, of whom 81% and 79% – for low- and high-grade glioma, respectively – are primarily concerned with quality of life, not survival, when deciding on treatment ( 52 ).…”

“…Over time, HRQoL may be stable or even improve in low-grade glioma. Dutch data covering the experience of patients with diffuse low-grade glioma over more than 20 years showed that ≥86% of patients maintained or improved their physical and mental HRQoL between 7–26 years after diagnosis, while neurocognitive functioning remained stable or improved in 83% of patients ( 49 ). Still, depression and fatigue persisted in 23% and 53% of patients, respectively.…”

Extracellular vesicles from GABAergic but not glutamatergic neurons protect against neurological dysfunction following cranial irradiation

“…With ever increasing improvements in the diagnosis and treatment of cancer, survivorship continues to rise, however, survival is accompanied by a compromised quality of life 1 . Cranial irradiation used to treat primary and secondary malignancies of the brain may be an effective cancer therapy, still it results in long-term neurocognitive side effects, including progressive and frequently debilitating decrements in learning, memory, and mood that do not resolve over time 2 – 4 . To date, effective long-term solutions to this unmet medical need remain elusive.…”