Perspectives of choice and control in daily life for people following brain injury: A qualitative systematic review and meta-synthesis

Background and Objective: Acquired brain injury (ABI) can result in considerable life changes. Having choice and control over daily life is valued by people following ABI. This meta-synthesis will analyse and integrate international research exploring perspectives of choice and control in daily life following ABI. Methods: Databases were searched from 1980 to 13 January 2022 for eligible qualitative studies. After duplicates were removed, 22,768 studies were screened by title and abstract, and 241 studies received full-text assessment with 56 studies included after pearling. Study characteristics and findings were extracted that related to personal perspectives on choice and control by people with an ABI (including author interpretation and quotes). Data from each study were coded and then segments of coded data across the studies were compared to create multiple broad categories. Findings: Findings were then reduced from categories into 3 overarching themes with 12 subthemes. These themes were: (1) feeling like a second-class citizen; (2) reordering life and (3) choosing a path. Participants with an ABI tussled between their feelings of loss following brain injury and their thinking about how they start to regain control and become agents of their own choices. The themes describe their sense of self, their changed self and their empowered self in relation to ‘choice and control’. Conclusions: Re-engaging with choice and control after ABI is dynamic and can be challenging. Health professionals and supporters need to facilitate a gradual and negotiated return to agency for people following ABI. A sensitive and person-centred approach is needed that considers the readiness of the person with ABI to reclaim choice and control at each stage of their recovery. Clear service or process indicators that are built on lived experience research are needed to facilitate changes in service delivery that are collaborative and inclusive. Patient or Public Contribution: This review included the voices of 765 people living with ABI and was conducted by a diverse team of allied health professionals with practice knowledge and research experience with people following ABI. Twenty-nine of the 56 included studies had participants contributing to their design or analysis

Complications, compliance and undertreatment do not explain the relationship between cognition and survival in diffuse glioma patient.

Background. Cognitive deficits occur in all different grades of glioma. In a recent study, we found these deficits to be independently, and possibly causally, related to survival in diffuse gliomas. In this study, we investigated whether the relationship between cognition and survival was mediated by three different factors: undertreatment, complications of treatment, and compliance. We hypothesized that patients with cognitive impairment may undergo less intensive treatment, be less compliant, and suffer more from complications, resulting in shortened survival for cognitively impaired patients. Methods. In a retrospective cohort study of patients undergoing awake craniotomy between operative neuropsychological assessments in five cognitive domains. We used Structural Equation Modeling to perform mediation analyses. Mediation analyses are analyses to evaluate whether a variable is a factor in the causal chain, referred to as an intermediate factor. Results. In total 254 patients were included, of whom 111 patients were LGG patients and 143 were HGG patients. The most frequently impaired domain was memory (37.8% ≤–2 SD) in HGG and attention and executive functioning in LGG (33.3≤–1.5 SD). We confirmed the significant association between different cognitive domains and survival. These associations could not be explained by one of the aforementioned intermediate factors. Conclusions. This suggests that other mechanisms should be involved in the relation between cognition and survival. Hypothetically, cognitive functioning can act as a marker for diffuse infiltration of the tumor or cognitive functioning and survival could be determined by overlapping germline and somatic tumoral molecular-genetic factors

Drivers and consequences of cognitive functioning in glioma

1. The occurrence of neurocognitive deficits in diffuse glioma Treatment-naive glioma patients Cognitive impairments occur in the large majority of glioma patients. Because neurocognitive functioning (NCF) in glioma patients mostly has been studied postoperatively in previous literature, neurocognitive deficits were mainly thought to associate with surgery and medical therapies. However, neurocognitive deficits occur prior to any anti-tumor treatment and impairments can be found across all main cognitive domains. In domain-specific analyses, executive functioning and attention, memory, and psychomotor speed appeared to be involved most frequently (chapter 3), which is comparable to previously published literature (chapter 2). An explanation for this finding can be that these cognitive domains rely on widespread neural networks with multiple brain regions involved. For this reason, they can be altered easily by a mechanical conflict between the tumor and important nodes (hubs) or pathways of these networks.2-6 Neurocognitive changes after awake surgery Furthermore, we found that neurocognitive functioning is mostly maintained after awake surgery across different domains (chapter 4). Our results show that the domain psychomotor speed appeared most vulnerable to the effects of surgery, both at group level and at (the proportion of) individual-level deficits. 2. Factors that modulate neurocognitive functioning Treatment-naive glioma patients In the previous paragraph we saw that neurocognitive deficits occur prior to any anti-tumor treatment and impairments can be found across all main cognitive domains. These findings support the hypothesis that, in addition to treatment-related effects, the tumor and the direct effect of this tumor affects NCF in diffuse glioma. Chapter 9 focusses on the relation between the tumoral expression level of several biological markers and cognition in our own cohort of treatment naive patients. Most importantly, we found P-STAT5b, CD163, CD3 and SEMA3 to be independently associated with cognitive performance in different domains after correction for histopathological grade. Furthermore, we found specific associations (after correcting for volume and location) between expression level of CD3, IDH and psychomotor speed; IDH, BDNF, ATRX, CSNK2B, GAT3, SRF and EAAT1 and memory performance and for P-STAT5b, CSNK2B and IDH and executive functioning (chapter 9). So, our results support the hypothesis that in addition to its size and location, the metabolism and tumor genetics of a tumor can alter neural function. 3. Influence of neurocognitive functioning on survival Cognitive functioning is of great influence on quality of life and several studies already revealed that these deficits are significantly associated with survival in diffuse glioma patients25,26. In chapter 5 we focused on the independent relationship between executive functioning and memory, and survival. We found that cognitive impairments in executive functioning and memory are negatively associated with survival in diffuse glioma patients, even after correcting for all known possible confounders. Additionally, we found extensive domain-specific neuropsychological assessment to be more strongly correlated to survival than an often clinically used cognitive screener for cognitive decay, the MMSE

Tumor-related neurocognitive dysfunction in patients with diffuse glioma : a systematic review of neurocognitive functioning prior to anti-tumor treatment

Deficits in neurocognitive functioning (NCF) frequently occur in glioma patients. Both treatment and the tumor itself contribute to these deficits. Data about the role of the tumor are scarce, because NCF has mostly been studied postoperatively. We aimed to summarize data on pre-treatment NCF in glioma patients and to determine the overall and domain-specific prevalence of neurocognitive dysfunction. We searched PubMed and Embase according to PRISMA-P protocol for studies that evaluated pre-treatment NCF in glioma patients (1995-November 2016) and extracted information about NCF. We performed analysis of data for two main outcome measures; mean cognitive functioning of the study sample (at group level) and the percentage of impaired patients (at individual level). We included 23 studies. Most studies were small observational prospective cohort studies. In 11 (47.5%) studies, patient selection was based on tumor location. NCF was analyzed at the group level in 14 studies, of which 13 (92.9%) found decreased NCF at group level, compared to normative data or matched controls. The proportion of individuals with decreased NCF was reported in 15 studies. NCF was impaired (in any domain) in 62.6% of the individuals (median; interquartile range 31.0–79.0). Cognitive impairments were more common in patients with high-grade glioma than with low-grade glioma (OR 2.50; 95% CI 1.71–3.66). Cognitive impairment occurs in the majority of treatment-naive glioma patients, suggesting that neurocognitive dysfunction is related to the tumor. However, the literature about pre-treatment NCF in glioma patients is characterized by small-scale studies and strong heterogeneity in patient selection, resulting in high risk of bias

Tumor-related neurocognitive dysfunction in patients with diffuse glioma: a systematic review of neurocognitive functioning prior to anti-tumor treatment.

Deficits in neurocognitive functioning (NCF) frequently occur in glioma patients. Both treatment and the tumor itself contribute to these deficits. Data about the role of the tumor are scarce, because NCF has mostly been studied postoperatively. We aimed to summarize data on pre-treatment NCF in glioma patients and to determine the overall and domain-specific prevalence of neurocognitive dysfunction. We searched PubMed and Embase according to PRISMA-P protocol for studies that evaluated pre-treatment NCF in glioma patients (1995-November 2016) and extracted information about NCF. We performed analysis of data for two main outcome measures; mean cognitive functioning of the study sample (at group level) and the percentage of impaired patients (at individual level). We included 23 studies. Most studies were small observational prospective cohort studies. In 11 (47.5%) studies, patient selection was based on tumor location. NCF was analyzed at the group level in 14 studies, of which 13 (92.9%) found decreased NCF at group level, compared to normative data or matched controls. The proportion of individuals with decreased NCF was reported in 15 studies. NCF was impaired (in any domain) in 62.6% of the individuals (median; interquartile range 31.0-79.0). Cognitive impairments were more common in patients with high-grade glioma than with low-grade glioma (OR 2.50; 95% CI 1.71-3.66). Cognitive impairment occurs in the majority of treatment-naive glioma patients, suggesting that neurocognitive dysfunction is related to the tumor. However, the literature about pre-treatment NCF in glioma patients is characterized by small-scale studies and strong heterogeneity in patient selection, resulting in high risk of bias

Tumor-related neurocognitive dysfunction in patients with diffuse glioma : a systematic review of neurocognitive functioning prior to anti-tumor treatment

Deficits in neurocognitive functioning (NCF) frequently occur in glioma patients. Both treatment and the tumor itself contribute to these deficits. Data about the role of the tumor are scarce, because NCF has mostly been studied postoperatively. We aimed to summarize data on pre-treatment NCF in glioma patients and to determine the overall and domain-specific prevalence of neurocognitive dysfunction. We searched PubMed and Embase according to PRISMA-P protocol for studies that evaluated pre-treatment NCF in glioma patients (1995-November 2016) and extracted information about NCF. We performed analysis of data for two main outcome measures; mean cognitive functioning of the study sample (at group level) and the percentage of impaired patients (at individual level). We included 23 studies. Most studies were small observational prospective cohort studies. In 11 (47.5%) studies, patient selection was based on tumor location. NCF was analyzed at the group level in 14 studies, of which 13 (92.9%) found decreased NCF at group level, compared to normative data or matched controls. The proportion of individuals with decreased NCF was reported in 15 studies. NCF was impaired (in any domain) in 62.6% of the individuals (median; interquartile range 31.0-79.0). Cognitive impairments were more common in patients with high-grade glioma than with low-grade glioma (OR 2.50; 95% CI 1.71-3.66). Cognitive impairment occurs in the majority of treatment-naive glioma patients, suggesting that neurocognitive dysfunction is related to the tumor. However, the literature about pre-treatment NCF in glioma patients is characterized by small-scale studies and strong heterogeneity in patient selection, resulting in high risk of bias

Neurocognitive changes after awake surgery in glioma patients: a retrospective cohort study

Purpose Deficits in neurocognitive functioning (NCF) frequently occur in glioma patients. Both treatment and the tumor itself contribute to these deficits. In order to minimize the harmful effects of surgery, an increasing number of patients undergo awake craniotomy. To investigate whether we can indeed preserve cognitive functioning after state-of-the art awake surgery and to identify factors determining postoperative NCF, we performed a retrospective cohort study. Methods In diffuse glioma (WHO grade 2–4) patients undergoing awake craniotomy, we studied neurocognitive functioning both pre-operatively and 3–6 months postoperatively. Evaluation covered five neurocognitive domains. We performed analysis of data on group and individual level and evaluated the value of patient-, tumor- and treatment-related factors for predicting change in NCF, using linear and logistic regression analysis. Results We included 168 consecutive patients. Mean NCF-scores of psychomotor speed and visuospatial functioning significantly deteriorated after surgery. The percentage of serious neurocognitive impairments (− 2 standard deviations) increased significantly for psychomotor speed only. Tumor involvement in the left thalamus predicted a postoperative decline in NCF for the domains overall-NCF, executive functioning and psychomotor speed. An IDH-wildtype status predicted decline for overall-NCF and executive functioning. Conclusions In all cognitive domains, except for psychomotor speed, cognitive functioning can be preserved after awake surgery. The domain of psychomotor speed seems to be most vulnerable to the effects of surgery and early postoperative therapies. Cognitive performance after glioma surgery is associated with a combination of structural and biomolecular effects from the tumor, including IDH-status and left thalamic involvement

Neurocognitive changes after awake surgery in glioma patients: a retrospective cohort study

Purpose Deficits in neurocognitive functioning (NCF) frequently occur in glioma patients. Both treatment and the tumor itself contribute to these deficits. In order to minimize the harmful effects of surgery, an increasing number of patients undergo awake craniotomy. To investigate whether we can indeed preserve cognitive functioning after state-of-the art awake surgery and to identify factors determining postoperative NCF, we performed a retrospective cohort study. Methods In diffuse glioma (WHO grade 2–4) patients undergoing awake craniotomy, we studied neurocognitive functioning both pre-operatively and 3–6 months postoperatively. Evaluation covered five neurocognitive domains. We performed analysis of data on group and individual level and evaluated the value of patient-, tumor- and treatment-related factors for predicting change in NCF, using linear and logistic regression analysis. Results We included 168 consecutive patients. Mean NCF-scores of psychomotor speed and visuospatial functioning significantly deteriorated after surgery. The percentage of serious neurocognitive impairments (− 2 standard deviations) increased significantly for psychomotor speed only. Tumor involvement in the left thalamus predicted a postoperative decline in NCF for the domains overall-NCF, executive functioning and psychomotor speed. An IDH-wildtype status predicted decline for overall-NCF and executive functioning. Conclusions In all cognitive domains, except for psychomotor speed, cognitive functioning can be preserved after awake surgery. The domain of psychomotor speed seems to be most vulnerable to the effects of surgery and early postoperative therapies. Cognitive performance after glioma surgery is associated with a combination of structural and biomolecular effects from the tumor, including IDH-status and left thalamic involvement

Cognitive impairments are independently associated with shorter survival in diffuse glioma patients

Background: Diffuse gliomas (WHO grade II–IV) are progressive primary brain tumors with great variability in prognosis. Cognitive deficits are of important prognostic value for survival in diffuse gliomas. Until now, few studies focused on domain-specific neuropsychological assessment and rather used MMSE as a measure for cognitive functioning. Additionally, these studies did not take WHO 2016 diagnosis into account. We performed a retrospective cohort study with the aim to investigate the independent relationship between cognitive functioning and survival in treatment-naive patients undergoing awake surgery for a diffuse glioma. Methods: In patients undergoing awake craniotomy between 2010 and 2017, we performed pre-operative neuropsychological assessments in five cognitive domains, with special attention for the domains executive functioning and memory. We evaluated the independent relation between these domains and survival, in a Cox proportional hazards model that included state-of-the-art integrated histomolecular (‘layered’ or WHO-2016) classification of the gliomas and other known prognostic factors. Results: We included 197 patients. Cognitive impairments (Z-values ≦ − 2.0) were most frequent in the domains memory (18.3%) and executive functioning (25.9%). Impairments in executive functioning and memory were significantly correlated with survival, even after correcting for the possible confounders. Analyses with the domains language, psychomotor speed, and visuospatial functioning yielded no significant results. Extensive domain-specific neuropsychological assessment was more strongly correlated to survival than MMSE. Conclusion: Cognitive functioning is independently related to survival in diffuse glioma patients. Possible mechanisms underlying this relationship include the notion of cognitive functioning as a marker for diffuse infiltration of the tumor and the option that cognitive functioning and survival are determined by overlapping genetic pathways and biomarkers