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. 2023 Feb 14;25(2):351-364.
doi: 10.1093/neuonc/noac185.

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

Florien W Boele  1   2 , Patricia W M den Otter  3 , Jaap C Reijneveld  4   5 , Philip C de Witt Hamer  6 , Hinke F van Thuijl  4   5 , Linda M C Lorenz  3 , Pieter Wesseling  7   8 , Frank J Lagerwaard  9 , Martin J B Taphoorn  10   11 , Mathilde C M Kouwenhoven  5 , Tom J Snijders  12 , Linda Douw  13 , Martin Klein  3
Affiliations

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

Florien W Boele et al. Neuro Oncol. .

Abstract

Background: While patients with diffuse low-grade glioma (LGG) often survive for years, there is a risk of tumor progression which may impact 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 (short form-36 health survey [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. Changes over time (T1-T2-T3) on group and participant level were assessed. Where available, histology of the initial tumor 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.

Keywords: depression; fatigue; low-grade glioma; quality of life; survivorship.

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Figures

Fig. 1
Fig. 1
Participant flow diagram.
Fig. 2
Fig. 2
Generic health-related quality of life scale scores at T1, T2, and T3. Raincloud plots depict all individual patients’ scores with each “raindrop” representing a patient, as well as the boxplot and overall distribution of scores visualized as a “cloud”. MCS, Mental Component Summary; PCS, Physical Component Summary; PF, physical functioning; RP, role functioning physical; BP, bodily pain; SF, social functioning; MH, mental health; RE, role functioning emotional; VT, vitality; GH, general health perceptions.
Fig. 3
Fig. 3
Sankey diagram of patient overall change in HRQOL (A) and NCF (B) over time in percentages. HRQOL, health-related quality of life; NCF, neurocognitive functioning.
See this image and copyright information in PMC

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