Evidence map›Paper›PMID 35908832›Full record

ArticleNeuro-oncology2023

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

Florien W Boele, Patricia W M den Otter, Jaap C Reijneveld, Philip C de Witt Hamer, Hinke F van Thuijl, Linda M C Lorenz, Pieter Wesseling, Frank J Lagerwaard, Martin J B Taphoorn, Mathilde C M Kouwenhoven and 3 more

Registry-linked trialOpen access · hybridAbstract read
In one paragraph

Article in Neuro-oncology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07628647 (Pilot Study of the Living Well With Brain Cancer Intervention), which is not on this map. Cited by 24 papers.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed
5.0field-weighted citation impact, top 4% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT07628647 nanot yet recruitingnot on this mapstarted 2026, after this paper: background citation

Pilot Study of the Living Well With Brain Cancer Intervention

TypeinterventionalSponsorUniversity of Colorado, DenverRan2026 to 2027Enrolled64ConditionsBrain CancerArmsGroup Self-Management Sessions, Educational Materials Only
3 · Its place in the literature

Who cites it

24 citing papers in PubMed, 33 citations in OpenAlex.

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  4. Observational
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  14. Multidisciplinary Management of Isocitrate Dehydrogenase-Mutated Gliomas in a Contemporary Molecularly Defined Era.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2024
    Review
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  16. Understanding supported self-management for people living with a lower-grade glioma: Implementation considerations through the lens of normalisation process theory.Health expectations : an international journal of public participation in health care and health policy · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 6 institutions in 2 countries.

Florien W BoeleLeeds Institute of Medical Research at St James's, St James's University Hospital, University of Leeds, Leeds, UK.ORCID 0000-0003-0409-7949
Patricia W M den OtterDepartment of Medical Psychology, Cancer Center Amsterdam, Brain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Jaap C ReijneveldDepartment of Neurology, SEIN, Heemstede, the Netherlands.ORCID 0000-0002-2257-3147
Philip C de Witt HamerDepartment of Neurosurgery, Cancer Center Amsterdam, Brain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID 0000-0003-2988-8544
Hinke F van ThuijlDepartment of Neurology, SEIN, Heemstede, the Netherlands.
Linda M C LorenzDepartment of Medical Psychology, Cancer Center Amsterdam, Brain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Pieter WesselingDepartment of Pathology, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID 0000-0001-5453-5201
Frank J LagerwaardDepartment of Radiation Oncology, Cancer Center Amsterdam, Brain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID 0000-0002-8740-2517
Martin J B TaphoornDepartment of Neurology, Leiden University Medical Center, Leiden, the Netherlands.ORCID 0000-0001-9949-4722
Mathilde C M KouwenhovenDepartment of Neurology, Cancer Center Amsterdam, Brain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, the Netherlands.ORCID 0000-0001-5252-4365
Tom J SnijdersUMC Utrecht Brain Center, Department of Neurology and Neurosurgery, University Medical Center Utrecht, Utrecht, the Netherlands.ORCID 0000-0003-0857-081X
Linda DouwDepartment of Anatomy and Neurosciences, Amsterdam Neuroscience, Cancer Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID 0000-0001-7058-4062
Martin KleinDepartment of Medical Psychology, Cancer Center Amsterdam, Brain Tumor Center Amsterdam, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.ORCID 0000-0003-4160-5746
Amsterdam University Medical Centers · NLAmsterdam Neuroscience · NLLeiden University Medical Center · NLPrincess Máxima Center · NLUniversity Medical Center Utrecht · NLUniversity of Leeds · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundWhile 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).

methodsParticipants 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.

resultsThirty 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.

conclusionsWhile HRQOL and NCF do not appear greatly impacted during long-term survivorship in LGG, depressive symptoms and fatigue are persistent.

Indexed as

Brain NeoplasmsGliomaCaregiversFatigueHumansLongitudinal StudiesQuality of LifeSurveys and Questionnairesdepressionfatiguelow-grade gliomaquality of lifesurvivorship

Identifiers

PMID35908832
PMCPMC9925694
OpenAlexW4289100818

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.