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Acta Neurochirurgica (2024) 166:166
https://doi.org/10.1007/s00701-024-06037-7
ORIGINAL ARTICLE
Cognition andhealth‑related quality oflife inlong‑term survivors
ofhigh‑grade glioma: aninteractive perspective frompatient
andcaregiver
JochemK.H.Spoor1 · MarikeDonders‑Kamphuis1,2 · WenckeS.Veenstra3 · SarahA.vanDijk4·
ClemensM.F.Dirven1 · PeterA.E.SillevisSmitt4 · MartinJ.vandenBent4 · SiegerLeenstra1 ·
DjainaD.Satoer1
Received: 19 August 2023 / Accepted: 14 March 2024 / Published online: 3 April 2024
© The Author(s) 2024
Abstract
Background The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival
in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim
to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers’ evaluations, and the
effect on caregiver strain and burden.
Methods 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5years) and 15 caregivers
were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depres-
sion, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by
patients and/or their caregivers.
Results Mean survival was 12years (grade III) and 8years (grade IV). Cognition was significantly impaired with a large
individual variety. Patients’ general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agree-
ment was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of
the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language,
and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication
deficits. Caregiver burden was not related to cognitive deficits.
Conclusions In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large
variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and
HRQoL in patients and the need for patient and caregiver support.
Keywords High-grade glioma· Long-term survival· Cognition· Quality of life· Caregivers
Abbreviations
BNT Boston Naming Test
CSI Caregiver Strain Index
DIMA Diagnostic Instrument for Mild Aphasia
EORTC European Organization for Research and Treat-
ment of Cancer
HADS Hospital Anxiety and Depression Scale
HGG High-grade glioma
HRQoL Health-related quality of life
HVLT Hopkins Verbal Learning Test
TMT Trail Making Test
TT Token Test
QLQ Quality of Life Questionnaire
ZBI Zarit Burden Interview
Shared first authorship:Jochem Spoor and Marike Donders-
Kamphuis as both authors contributed equally to this paper.
* Jochem K. H. Spoor
j.spoor@erasmusmc.nl
1 Department ofNeurosurgery, Erasmus MC – University
Medical Center Rotterdam, Doctor Molewaterplein 40,
3015GDRotterdam, TheNetherlands
2 HMC, Department ofNeurosurgery, TheHague,
TheNetherlands
3 Department ofRehabilitation Medicine, Center
forRehabilitation - University ofGroningen, University
Medical Center Groningen, Groningen, TheNetherlands
4 Department ofNeurology, Erasmus MC – University
Medical Center Rotterdam, Rotterdam, TheNetherlands
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Acta Neurochirurgica (2024) 166:166166 Page 2 of 8
Introduction
Despite intensive combination treatment with surgery,
radiotherapy, and chemotherapy, high-grade gliomas
(HGG) still have a poor prognosis. The tumor itself, the
tumor treatments, co-morbid conditions such as epilepsy,
and medication all may impair brain function, resulting in
impaired cognition [7, 20]. This becomes more relevant
over time, thereby affecting long-term survivors substan-
tially more than short-term survivors [9]. Prolonged sur-
vival is less meaningful if cognition and well-being are
not preserved [4]. In addition, cognitive functioning and
health-related quality of life (HRQoL) are positively cor-
related with survival [18, 24, 41]. However, data on long-
term HGG survivors is limited.
Cognition can be measured by validated tests and by
questionnaires. In brain tumor patients, results on cogni-
tive tests were not always in accordance with perceived
cognitive functioning [12, 40]. In addition, it is common
that perceived cognition differs when rated by the patient
or caregiver [6, 13, 40]. Knowing how to assess cognition
optimally is essential to referring for support or rehabilita-
tion adequately.
Without a doubt, the diagnosis of an HGG impacts both
the patient and the caregiver. Caring for an HGG patient
brings psychological distress and a heavy burden [1, 17,
30, 31]. For caregivers of HGG long-term survivors,
this situation lasts for years. How a patients ‘ cognitive
function influences the caregiver’s strain and burden is
unknown.
In this study, we primarily aim to investigate the cog-
nitive status of long-term HGG survivors. Various tests
that measure different cognitive functions and question-
naires on HRQoL and well-being (filled out by the patient
and caregiver) are administered. Secondarily, we focus on
the influence of cognitive functioning on the perceived
HRQoL of the patient and the caregiver’s strain and
burden.
Methods andmaterials
This study was conducted between January 2019 and July
2020 after screening a departmental database to select adult
patients with an initial diagnosis of glioma WHO grade III
or IV. All patients were treated with surgery and combi-
nations of radiotherapy and chemotherapy between 1999
and 2014 and survived at least five years after diagnosis. If
deemed feasible a maximal safe resection was performed
under awake conditions or under general anesthesia. All
other patients underwent a navigation based biopsy. Because
the data was collected prior to 2021, the 2016 WHO tumor
classification was used [22]. Patients with stable diseases
and their caregivers were included. Patients who were unable
to perform the tests or who were not native speakers of the
Dutch language were excluded. A cohort of 36 patients was
identified from our departmental database. Fifteen patients
were excluded because of tumor progression (n = 4), decease
(n = 3), refusal (n = 3), relocation to another region (n = 2),
participation in a different study (n = 1), a different tumor
(n = 1), or another mother tongue (= 1). Sociodemographic
and clinical characteristics were collected. The Ethical Com-
mittee of Erasmus MC Rotterdam approved the study (MEC
2017–1152). All participants gave written informed consent.
Table1 shows the demographic and clinical characteris-
tics of the 21 included patients and 15 caregivers. The tumor
was localized in the left hemisphere in 8 patients (38%), the
right hemisphere in 12 patients (57%), and multifocal in one
patient (5%). Histological analysis showed WHO-grade III
(anaplastic astrocytoma/anaplastic oligodendroglioma) in
eight patients (38%), and glioblastoma (WHO grade IV) in
13 patients (62%). See Table1 for further molecular char-
acterization of these tumors. The mean survival at cognitive
assessment was 12years in grade III (range 7–16years) and
eight years in grade IV (range 5–20years).
Cognitive tests on the domains of verbal memory (Hopkins
Verbal Learning Test, HVLT, [3]), attention and executive
functioning (Trail Making Test, TMT, [38]), and language
(Boston Naming Test, BNT [19]; shortened Token Test, TT,
[8]; Diagnostic Instrument for Mild Aphasia, DIMA, [32];
category fluency [23] and letter fluency [33]) were adminis-
tered. Questionnaires on HRQoL (EORTC QLQ-C30, [39];
EORTC QLQ-BN20, [25]), anxiety and depression (Hospital
Anxiety and Depression Scale, HADS, [44]), caregiver strain
(Caregiver Strain Index, CSI, [28]), and caregiver burden
(Zarit Burden Interview, ZBI, [2]) were filled out by each
patient and/or caregiver. Table2 describes all subtests and
questionnaires. Tests were administered by an experienced
clinical linguist (DS). Tests and questionnaires were scored
according to standardized scoring criteria. Individual patients’
test scores were converted into z-scores using the mean and
standard deviation of the matched normative data on that test.
A z-score between -1.5 and -2.0 reflects a mild impairment,
and a z-score of ≤ -2.0 reflects a severe impairment [21].
Statistical analyses were performed with SPSS (version
25). After testing for normal distribution, parametric and/
or non-parametric tests were used. A one-sample t-test
was used to compare patients to published normative data
healthy controls. Statistically deviating test results were
used in the following analyses. Independent samples t-tests
were used for subgroup analysis on hemispheric location,
tumor grade, and survival (under or above 12years[9])
and to analyze differences in ratings between patients
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Acta Neurochirurgica (2024) 166:166 Page 3 of 8 166
and caregivers. Associations between cognitive tests and
HRQoL (patient and caregiver reports) and caregiver bur-
den were analyzed by Pearson correlations. The level of
significance was set at p < 0.05.
Results
Cognitive tests
At group level, test scores in all cognitive domains were
significantly (p < 0.05) lower in the long-term HGG survi-
vors compared to normative data. Table3 shows the results
and p-values for each subtest. Three out of four subtests for
verbal memory differed significantly compared to healthy
controls, and all subtests for attention and executive func-
tioning were substantially lower. For language, three out of
eight subtests were significantly impaired. Subgroup analy-
ses on hemispheric localization and tumor grade revealed no
significant differences in any subtest. Patients with a 12-year
or longer survival, performed significantly lower on a verbal
memory test (HVLT Delayed recall, p = 0.003), but no other
subtests differed significantly.
At the individual level, a large variety in individual cogni-
tive performance was found. Fifteen out of 21 patients com-
pleted all subtests. Only one patient (5%) showed no cogni-
tive impairments. All other patients were mildly impaired
(z ≤ 1.50) on one to five subtests (mean 1.27, SD 1.33) and
severely impaired (z ≤ 2.00) on one to eight subtests (mean
3.07, SD 2.49).
Questionnaires
Patients’ global health status (QLQ-C30) did not differ sig-
nificantly from normative data (p > 0.05). In contrast, all
functional scales were substantially lower (see Table4) than
normative data (p ≤ 0.05). Survival, hemispheric localization,
and tumor grade subgroup analyses revealed no significant
differences between groups (p > 0.05). Patient-proxy agree-
ment was found in all subscales except emotional function-
ing (p ≤ 0.05). Patients reported a lower level of emotional
functioning than their caregivers reported about the patient.
Emotional well-being was measured in patients and their
caregivers. Three patients had a deviant score on the HADS.
Two of them had high levels of symptoms of anxiety, and
one had symptoms of depression. Five caregivers reported
a high caregiver strain on the CSI. Four caregivers reported
a high burden on the ZBI. Subgroup analysis on the sex of
the caregiver showed no significant differences.
Correlations
Table5 presents the correlations between cognitive test
scores and HRQoL-questionnaires. Significant correlations
(p ≤ 0.05) were found between attention and executive func-
tioning (TMT). In addition, perceived global health status
(QLQ-C30) and cognitive functioning reported by both
patient and caregiver (QLQ-C30) correlated significantly.
Table 1 Demographic and clinical characteristics; y = years; * WHO
classification 2016 [22]
Value (%)
Sex: male/female 12 (57%) /
9 (43%)
Mean age in years (range) 51 (39–70 y)
Mean years of education (range) 15 (12–20 y)
Handedness: right/left 19 (90%) / 2 (10%)
Tumor location
Left 8 (38%)
• Frontal 4 (19%)
• Temporal 1 (5%)
• Parieto-occipital 1 (5%)
• Occipital 2 (10%)
Right 12 (57%)
• Frontal 7 (33%)
• Parietal 1 (5%)
• Parieto-occipital 1 (5%)
• Temporoparietal 2 (10%)
• Hippocampal 1 (5%)
Multifocal 1 (5%)
Histology*
WHO-grade III 8 (38%)
• Anaplastic astrocytoma 5 (24%)
• IDH mutant, MGMT methylated 2 (10%)
• Not specified 3 (14%)
• Anaplastic oligodendroglioma 3 (14%)
• IDH mutant, MGMT methylated 1 (5%)
• Not specified 2 (10%)
WHO-grade IV 13 (62%)
• Glioblastoma 12 (57%)
• IDH mutant, MGMT methylated 3 (14%)
• IDH mutant, MGMT wildtype 3 (14%)
• IDH wildtype, MGMT methylated 3(14%)
• Not specified 3 (14%)
• Gliosarcoma 1 (5%)
Type of surgery:
• Resection under general anesthesia 17 (81%)
• Awake resection 1 (5%)
• Biopsy 3 (14%)
Postoperative radiotherapy + temozolomide 21 (100%)
Mean survival in years at neuropsychological evaluation
• Grade III (range) 12 (7-16y)
• Grade IV (range) 8 (5-20y)
Caregivers (n = 15)
Sex: male/female 6 (40%) / 9 (60%)
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Acta Neurochirurgica (2024) 166:166166 Page 4 of 8
Category fluency is correlated with perceived cognitive
functioning (QLQ-C30) when reported by the patient
(r = 0.487) and is associated with communication deficits
(QLQ-BN20) reported by both the patient (r = -0.540) and
caregiver (r = -0.596). Verbal memory (HVLT, r = -0.697)
and word finding (BNT, r = -0.565) correlated with commu-
nication deficits reported by the caregiver. Caregiver burden
(ZBI) is not associated (p > 0.05) with any of the cognitive
subtests.
Discussion
In this study, we found that the cognitive status of a cohort
of 21 long-term HGG survivors was impaired in multiple
cognitive domains. Despite this, global health status as
measured by QLQ-C30 is intact. Patient-proxy agreement
is found on most subscales in HRQoL questionnaires. An
elevated caregiver burden was found in some caregivers but
was not related to patients’ cognitive status.
For the cognitive tests, we discovered that in almost all
patients cognition was impaired in terms of verbal memory,
attention, executive functioning and language. This is in line
with Habets etal. [14]. Steinbach etal. [36] also reported
attention problems in long-term HGG survivors. However,
in their sample, verbal memory was preserved. At the indi-
vidual level, 95% of our patients had mild or severe impair-
ments in at least one subtest. Previous research on long-term
HGG survivors found that 38–100% of patients had mild
to severe impairments [11, 14, 16, 36]. Differences may be
explained by the quality of neurocognitive reports, that is,
how cognition was measured (screening or test), by the defi-
nitions of the cognitive domains, and by the thresholds of
the deviant scores [15].
For the HRQoL-questionnaires, we revealed that global
health status was not deviant compared to healthy con-
trols. Some earlier studies in long-term HGG survivors also
reported unaffected quality of life [4, 11, 36], whereas others
reported lower [14] and higher levels [27] in patients com-
pared to healthy controls. Long-term HGG survivors coping
with the side-effects of their treatment may re-evaluate their
internal standards of HRQoL, which may explain the per-
ceived good HRQoL [35]. In contrast to global health status,
our patients rated reduced functioning on all subscales. In
studies using the QLQ-C30, cognitive and social functioning
was also significantly lower compared to controls [11, 14]
apart from physical and role functioning. Patients in these
studies had different diagnoses, which could have accounted
for the differences in comparison to our patient group.
Except for emotional functioning, no differences in
perceived HRQoL were found between HGG patients and
their caregivers in our study. Literature on low-grade gli-
oma describes both low agreement [10, 34] and moderate
agreement [10, 13, 40]. Low agreement is explained by
cognitive impairments because patients may be unaware of
their cognitive deficits in everyday life [10]. Our patients
had cognitive impairments, but despite this, no differences
were found in most measurements.
Table 2 Administered cognitive tests and questionnaires
Cognitive tests Verbal memory Verbal learning, immediate and
delayed recall and delayed recogni-
tion
Hopkins Verbal Learning Test (HVLT): direct
recall, delayed recall, recognition true posi-
tives, recognition false positives [3]
Attention and executive functioning Visuomotor speed, (divided) atten-
tion, mental flexibility Trail Making Test (TMT): A, B, B/A [38]
Language Word retrieval Boston Naming Test (BNT) [19]
Incidence and severity of aphasia,
language comprehension Shortened Token Test (TT) [8]
Phonology, semantic judg-
ment + word retrieval, spontaneous
speech in context
Diagnostic Instrument for Mild Aphasia
(DIMA): repetition, semantic odd-picture
out, sentence completion [32]
Flexibility of semantic and phono-
logical thought Category fluency: animals, professions [23]
Letter fluency [33]
Questionnaires Quality of Life (patient and caregiver) Quality of life and general cancer
symptoms EORTC QLQ-C30 [39]
Quality of life and specific brain
tumor symptoms EORTC QLQ-BN20 [25]
Anxiety and depression (patient) Anxiety and depression Hospital Anxiety and Depression Scale
(HADS) [44]
Caregiver strain and burden (caregiver) Caregiver strain Caregiver Strain Index (CSI) [28]
Caregiver burden Zarit Burden Interview (ZBI) [2]
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Acta Neurochirurgica (2024) 166:166 Page 5 of 8 166
There were two patients who showed indications for
anxiety and one patient who showed indications of signs
of depression. In other studies on long-term survivors,
percentages differ from 10–35 [11, 27, 36], however, the
numbers of patients are very small. All are of limited sam-
ple size. It has been observed that caregivers recognize
depression better than patients [5, 29], possibly causing
an underscore. Despite these difficulties, measuring the
signs of depression remains vital as it is related to shorter
survival [24] and is a very relevant factor to quality of life.
Indications of high burden and caregiver strain were
reported in one-third of our caregivers, which is in line with
caregivers of long-term meningioma survivors [43]. In the
literature on caregivers of HGG patients, caregiver burden
is only reported shortly after diagnosis, when it is extremely
high [26, 31]. In this phase, the influence of patients’ cognition
on caregiver burden is unclear. Sterckx etal. [37] describe in
their systematic review cognitive deficits as the most signifi-
cant challenge for caregivers to deal with. However, most of
their included studies did not measure caregiver burden with
standardized measurements. In our sample, caregiver burden
cannot be explained by the patient's cognitive functioning.
Although several studies among HGG patients, such as Wefel
etal. [42], have reported on both neurocognitive symptoms and
HRQoL, our study is the first to correlate the results of cogni-
tive tests to perceived HRQoL. In meningioma and low-grade
glioma the association between perceived executive functioning
and the outcome of cognitive tests remains unclear [40]. In our
study, attention and executive functioning (TMT) and language
(Category fluency) were found to be related to perceived global
health status (QLQ-C30), cognitive functioning (QLQ-C30),
and communication deficit (QLQ-BN20), indicating that the
test used could objectify perceived cognitive functioning and
language or communication deficits.
Limitations in our study are due to a small sample size dic-
tated by the scarcity of long-term survival in HGG. Furthermore,
not all patients could complete all subtests, and not all their car-
egivers could be included. The continuation of data collection
among long-term survivors and their caregivers is therefore of
utmost importance in order to draw more solid conclusions.
Future research, including a baseline examination is needed
to assess the agreement in patient and caregiver ratings and
to determine which factors influence caregiver burden in car-
egivers of brain tumor patients in general and in long-term
Table 3 Results of the cognitive tests on group level by cognitive domain; n = Number of patients who completed the test, as some tests were not
completed in all patients due to fatigue or paresis (TMT) * = p ≤ 0.05, significantly lower compared to healthy controls
Domain Test nSubtest Mean (z-score)
Verbal memory Hopkins Verbal Learning Test (HVLT) [3] 19 Direct recall -1.64*
Delayed recall -1.63*
Recognition: true positives -0.84*
Recognition: false positives -0.52
Attention and executive
functioning Trail Making Test (TMT) [38] 18 A -1.40*
B -1.59*
B/A -0.98*
Language Boston Naming Test (BNT) [19] 20 -1.37*
Shortened Token Test (TT) [8] 20 -0.57
Verbal Fluency [23, 33] 18 Category: Animals -1.11*
Category: Professions -1.32*
Letter -0.43
Diagnostic Instrument Mild Aphasia (DIMA) [32] 19 Repetition -1.04
Semantic out-picture-out -0.62
Sentence completion -0.18
Table 4 Subscales EORTC QLQ-C30 and QLQ-BN20 filled in by
patient and caregiver; SD = standard deviation; * = p ≤ 0.05, signifi-
cantly lower compared to healthy controls; ** = p ≤ 0.05, significant
difference between patient and caregiver report. For QLQ-BN20
Communication deficit no normative data are available
Patient report Caregiver
report
Mean SD Mean SD
QLQ-C30 Global health status 75.17 17.00 75.47 18.68
QLQ-C30 Physical functioning 76.23* 25.45 72.53 27.22
QLQ-C30 Role functioning 67.14* 29.29 58.93 32.62
QLQ-C30 Emotional functioning 86.23* 14.36 92.20** 9.76
QLQ-C30 Cognitive functioning 73.29* 21.07 75.47 18.68
QLQ-C30 Social functioning 70.49* 24.56 67.80 28.37
QLQ-BN20 Communication deficit 18.97 21.70 19.93 26.35
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Acta Neurochirurgica (2024) 166:166166 Page 6 of 8
survivors. Furthermore, care and research is to focus both
on impairments and on activity limitations and participa-
tion restrictions. In this way, the needs for rehabilitation and
support for the patient and caregiver can be identified and
addressed, with cognitive rehabilitation and family-centered
care becoming part of the future standard of care for long-term
survivors. Furthermore, future neuro-oncological therapies are
to focus on survival as well as cognition, with HRQOL being
one of the primary outcome measures.
Conclusion
Long-term HGG survivors have impaired cognition in mul-
tiple cognitive domains at the group level, with a wide range
at the individual level. However, global health status is intact
despite lower functional scales. Patient-proxy agreement
was found in most HRQoL subscales. In long-term HGG
survivors, we strongly recommend a patient-proxy tailored
approach using both cognitive tests and HRQoL question-
naires to investigate individual cognitive impairments, qual-
ity of life, and caregiver strain and burden.
Author contributions Jochem Spoor, Sieger Leenstra, Djaina Satoer
and Martin van den Bent contributed to the study conception and
design. Material preparation, data collection and analysis were per-
formed by Jochem Spoor, Marike Donders-Kamphuis, Wencke Veen-
stra, Sarah van Dijk and Djaina Satoer. The first draft of the manuscript
was written by Jochem Spoor, Marike Donders-Kamphuis and Djaina
Satoer and all authors commented on previous versions of the manu-
script. All authors read and approved the final manuscript.
Funding Marike Donders-Kamphuis was funded by a grant from the
Research Fund of HMC (Wetenschapsbeurs 2021).
Data availability Data are available at request.
Declarations
Competing interests No competing interests.
Open Access This article is licensed under a Creative Commons Attri-
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Table 5 Correlations between cognitive tests and questionnaires. QL2 = Global health status, CF = cognitive functioning, CD = communication deficit, ZBI = Zarit Burden Interview,
HVLT = Hopkins Verbal Learning Test, TMT = Trail Making Test, BNT = Boston Naming Test ** = correlation is significant at the 0.01 level (2-tailed), * = correlation is significant at the 0.05
level (2-tailed)
HRQoL patient report HRQoL caregiver report Burden (car-
egiver)
QLQ-C30 QL2 QLQ-C30 CF QLQ-BN20 CD QLQ-C30 QL2 QLQ-C30 CF QLQ-BN20 CD ZBI
r p R P r p r p r p r p r p
HVLT Direct recall 0.129 .609 0.177 .482 -0.207 .409 0.018 .952 0.018 .952 -0.498 .083 0.056 .856
HVLT Delayed recall 0.275 .286 -0.028 .914 -0.256 .322 0.228 .476 0.228 .476 -0.697*.012* -0.167 .604
HVLT Recognition: true positives 0.212 .414 0.018 .946 -0.015 .955 0.149 .645 0.149 .645 -0.471 .122 -0.299 .344
TMT A 0.623 .006** 0.622 .006** -0.345 .160 0.319 .311 0.319 .311 0.134 .677 -0.319 .313
TMT B 0.585 .011* 0.452 .060 -0.290 .244 0.602 .038* 0.602 .038* -0.228 .476 -0.512 .089
TMT B/A 0.367 .134 0.145 .566 -0.192 .446 0.621 .031* 0.621 .031* -0.372 .234 -0.505 .094
BNT -0.071 .773 0.445 .056 -0.391 .098 -0.202 .471 -0.202 .471 -0.565 .028* 0.335 .241
Category fluency: animals 0.156 .551 0.487 .048* -0.540 .025* 0.443 .129 0.443 .129 -0.596 .032* -0.363 .246
Category fluency: professions -0.094 .721 0.067 .797 -0.325 .203 -0.125 .683 -0.125 .683 -0.281 .352 0.150 .641
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Acta Neurochirurgica (2024) 166:166 Page 7 of 8 166
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Comments
In this crossectional study the authors aimed to investigate the cognitive
status of high-grade glioma (HGG) long term survivors and analyse
the impact of their cognitive functioning on the percieved halth-
related quality of life (HRQoL) of the patient and the caregiver's strain
and burden. The HGG long-term survivors were recruited from a
departmental database. 21 patients and 15 caregivers were included.
Tests measuring verbal memory, attention, executive function and aspects
of language function were administered. In addition HRQoL, anxiety
and depression as well as caregiver's strain and burden were evaluated
by questionnaires and completed by the patients respectively there
caregivers. On group level the performance in all cognitive domains of
the HGG long term survivors were s ignificantly lower than in a healthy
reference group. The patients general self-reported HRQoL was not
low but all subscales showed deviant scores. There was a patient-proxy
agreement in most of the HRQoL subscales except regarding emotional
functioning. Thus the patients reported a lower emotional functioning
than their caregivers rated their functioning level. Among the caregivers
33% reported a high caregiver strain or burden. There was no association
between the caregiver's reported burden and the patients cognitive
dysfunction. This study adds to knowledge since the impact of the long
term survivors cognitive functioning on the caregiver's strain and burden
is rarely described in the literature.
Åsa Bergendal
Stockholm, Sweden
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