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This article explores three different comics by creators with brain tumors: Rick, written and drawn by Gordon Shaw; Going Remote, written by Adam Bessie and drawn by Peter Glanting; and Parenthesis, written and drawn by Élodie Durand. It examines how the affordances of the comics medium enables the creators to present an experience of subjective time that is multiple, diffuse, and contradictory, in contrast to the regular apportioning of time via calendars, schedules, and pathways essential to institutional neuro-oncology. The question of time here is significant because the side effects of brain tumors can include blackouts, seizures, and periods of extreme fatigue, during which the experience of time can be significantly disrupted. The title of the article therefore evokes a temporal duality: on the one hand, it refers to the common phrase used to describe what clocks do, as well as our ability to read them; on the other hand, it speaks to one of the most important qualities of graphic medicine, which is that it allows patients dealing with medical or health issues to tell time differently. The article explores the representation of personal time in Rick, social time in Going Remote, and lost time in Parenthesis.
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Neoplasias Encefálicas , Humanos , Neoplasias Encefálicas/psicología , Tiempo , Historietas como AsuntoRESUMEN
PURPOSE: The aim of this study was to investigate the experiences of living with glioblastoma from the perspective of patients themselves as well as their closest relatives, focusing on the changes in the life situation and the need for support. METHODS: Twenty-two semi-structured interviews were conducted with 12 patients (mean age 61 years, 7 male, 5 female) and 10 relatives (mean age 56 years, 3 male, 7 female). The relatives comprised of partners (n = 7), child (n = 1), sister (n = 1), or friend (n = 1). Questions focused on changes in the life situation and support needed to face these changes. Data was analyzed using inductive qualitative content analysis (QCA). RESULTS: Living with glioblastoma dramatically changes the lives of both patients and relatives. Cognitive symptoms (e.g., speech and memory disturbances), deterioration of physical function (e.g., paresis), and psychological function (e.g., behavioral changes, anxiety) can lead to impaired family dynamics, social isolation, and fear of the future. Support from other family members, friends, and healthcare professionals is crucial. Timely, tangible, and easily available support from the healthcare system the entire disease trajectory is sought after, enabling individualized care with emotional support, clearer information, and faster feedback. CONCLUSION: The changes in life situations faced by patients with glioblastoma and their closest relatives are dramatic and underline the importance of providing integrated care throughout the entire healthcare continuum, encompassing specialist neuro-oncological care, municipal support, and palliative care. Individualized support for both patients and relatives can enhance the sense of safety amid the chaos in their life situation.
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Neoplasias Encefálicas , Familia , Glioblastoma , Apoyo Social , Humanos , Glioblastoma/psicología , Masculino , Femenino , Persona de Mediana Edad , Anciano , Familia/psicología , Neoplasias Encefálicas/psicología , Aislamiento Social/psicología , Investigación Cualitativa , Adulto , Autonomía Personal , Entrevistas como AsuntoRESUMEN
PURPOSE: Patients with glioblastomas (GBMs) have poor prognosis despite various treatments; therefore, attention should be paid to maintaining the quality of survival. Neurocognitive deficits can affect the quality of life (QOL) in patients with GBM. Most studies concerning QOL and neurocognitive functions have demonstrated a relationship between QOL and self-reported neurocognitive decline, although this method does not accurately reflect damaged functional domains. Therefore, this study aimed to clarify the neurocognitive functions that influence the QOL in patients with GBMs using an objective assessment of neurocognitive functions. METHODS: Data from 40 patients newly diagnosed with GBMs were analyzed. All patients completed the assessment of QOL and various neurological and neurocognitive functions including general cognitive function, processing speed, attention, memory, emotion recognition, social cognition, visuospatial cognition, verbal fluency, language, motor function, sensation, and visual field at 6 months postoperatively. QOL was assessed using the 36-Item Short Form Survey (SF-36). In the SF-36, the physical, mental, and role and social component summary (PCS, MCS, and RCS, respectively) scores were calculated. Multiple logistic regression analyses and chi-square tests were used to evaluate the association between SF-36 scores and neurocognitive functions. RESULTS: The MCS was maintained, while the PCS and RCS scores were significantly lower in patients with GBMs than in healthy controls (p = 0.0040 and p < 0.0001, respectively). Among several neurocognitive functions, motor function and processing speed were significantly correlated with PCS and RCS scores, respectively (p = 0.0048 and p = 0.030, respectively). Patients who maintained their RCS or PCS scores had a higher probability of preserving motor function or processing speed than those with low RCS or PCS scores (p = 0.0026). CONCLUSIONS: Motor function and processing speed may be predictors of QOL in patients with GBMs.
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Neoplasias Encefálicas , Glioblastoma , Calidad de Vida , Humanos , Calidad de Vida/psicología , Masculino , Femenino , Persona de Mediana Edad , Glioblastoma/cirugía , Glioblastoma/psicología , Neoplasias Encefálicas/cirugía , Neoplasias Encefálicas/psicología , Anciano , Adulto , Pruebas Neuropsicológicas/estadística & datos numéricos , Cognición/fisiología , Velocidad de ProcesamientoRESUMEN
Background: Social competence is a domain in which pediatric brain tumour survivors (PBTS) are at risk of challenges. To follow-up on our earlier work, in this study we assessed specific social interaction behaviors and emotional functioning in PBTS relative to typically developing youth (TD). The study coincided with the onset of the global pandemic. Methods: Sixteen PBTS and 16 typically developing youth (TD) between 8-16 years old participated in the study. Youth completed an assessment of social behavior and parents completed online surveys regarding child social and emotional adjustment. Results: PBTS experienced greater impairments in social interaction behaviors and on indices of social adjustment relative to TD. PBTS and TD experienced similar levels of emotional problems. Social behavior challenges were associated with indices of anxiety, rather than depression. Time since pandemic onset was not associated with social emotional outcomes. Conclusions: It will be important to monitor and support the social adjustment of populations such as PBTS, as well as the emotional adjustment across PBTS and TD youth, following the pandemic.
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Neoplasias Encefálicas , COVID-19 , Supervivientes de Cáncer , Humanos , Adolescente , Niño , Neoplasias Encefálicas/psicología , Femenino , Masculino , Supervivientes de Cáncer/psicología , COVID-19/psicología , COVID-19/epidemiología , Emociones , Ansiedad/psicología , PandemiasRESUMEN
Affect recognition has emerged as a potential mechanism underlying the social competence challenges experienced by pediatric brain tumour survivors (PBTSs). However, many social interactions were altered during the pandemic, with the widespread use of masking potentially impacting affect recognition abilities. Here, we examine affect recognition in PBTSs and typically developing youth (TD) after the onset of the global pandemic. Twenty-three PBTSs and 24 TD between 8 and 16 years old were recruited and completed two performance-based affect recognition tasks (full and partial facial features) and a self-reported questionnaire on mask exposure in their social interactions. Their parents completed parent proxy questionnaires on their child's social adjustment and sociodemographics. The scores between the PBTSs and TD did not differ significantly in full (t(45) = 1.33, p = 0.19, d = 0.39, 95% CI [-0.69, 3.40]) or partial (t(37.36) = 1.56, p = 0.13, d = 0.46, 95% CI [-0.47, 3.60]) affect recognition, suggesting similar affect recognition between the two groups. These skills were also not significantly correlated with social adjustment or mask exposure (p > 0.05). However, the combined sample had significantly better scores in affect recognition when exposed to partial facial cues versus full. Additionally, participants obtained lower scores on a measure of full facial affect recognition and higher scores on a measure of partial affect recognition compared to pre-pandemic data. The pandemic may have influenced affect recognition across youth, underscoring the importance of further research into its lasting impact on the social competence of youth.
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Neoplasias Encefálicas , COVID-19 , Supervivientes de Cáncer , Humanos , COVID-19/epidemiología , COVID-19/psicología , Niño , Adolescente , Masculino , Femenino , Supervivientes de Cáncer/psicología , Neoplasias Encefálicas/psicología , Reconocimiento Facial , SARS-CoV-2 , AfectoRESUMEN
PURPOSE: The diagnosis of a primary brain tumor (PBT) causes significant distress for the caregiver-patient dyad, warranting increased supportive care intervention. Although researchers have previously assessed caregivers' perceptions of their own supportive care needs, no study to date has identified how patients perceive the caregiving experience and/or patients' recommendations for integrating supportive care of caregivers in neuro-oncology. This qualitative study examined caregiver distress as well as caregiver supportive care needs from the patients' perspective to inform future intervention development. METHODS: Adults with PBT (N = 15; Mage = 45; 53% female; 93% White) were divided into four, 90-min focus groups moderated by a clinical neuropsychologist. Patients responded to semi-structured interview questions regarding various supportive care needs throughout the course of disease. Each discussion was transcribed and coded using thematic content analysis and NVivo software. Inter-rater reliability was excellent (MKappa = 0.92, range = 0.85-0.93). RESULTS: Seven distinct codes related to PBT caregivers emerged and were classified into two broader themes: Caregiver Impact (47% of coded content) and Caregiver Support (53% of coded content). Caregiver Impact refers to patients' perspective of the practical and emotional demands of caregiving. Under Caregiver Support, patients cited a strong need for increased support of caregivers, including bereavement care, individual psychotherapy, and joint caregiver-patient dyad sessions. CONCLUSION: Patients with PBT expressed profound concerns regarding the demands of caregiving and its impact on the well-being of their loved ones. Findings emphasize the need for comprehensive dyadic support in neuro-oncology throughout the disease trajectory to enhance the overall quality-of-life for both patients and their caregivers.
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Neoplasias Encefálicas , Cuidadores , Grupos Focales , Investigación Cualitativa , Apoyo Social , Humanos , Cuidadores/psicología , Femenino , Masculino , Neoplasias Encefálicas/psicología , Persona de Mediana Edad , Adulto , Anciano , Estrés Psicológico/etiologíaRESUMEN
PURPOSE: People with primary malignant brain tumors experience serious health-related suffering caused by limited prognosis and high symptom burden. Consequently, neuro-oncological healthcare workers can be affected emotionally in a negative way. The aim of this study was to analyze the attitudes and behavior of nurses and physicians when confronted with spiritual distress in these patients. METHODS: Neurospirit-DE is a qualitative vignette-based, multicenter, cross-sectional online survey that was conducted in Bavaria, Germany. Reflexive thematic analysis was used for data analysis. RESULTS: A total of 143 nurses and physicians working in neurological and neurosurgical wards in 46 hospitals participated in the survey. The participants questioned if the ability to provide spiritual care can be learned or is a natural skill. Spiritual care as a responsibility of the whole team was highlighted, and the staff reflected on the appropriate way of involving spiritual care experts. The main limitations to spiritual care were a lack of time and not viewing spiritual engagement as part of the professional role. Some were able to personally benefit from spiritual conversations with patients, but many participants criticized the perceived emotional burden while expressing the imminent need for specific training and team reflection. CONCLUSIONS: Most neuro-oncological nurses and physicians perceive spiritual care as part of their duty and know how to alleviate the patient's spiritual distress. Nonetheless, validation of spiritual assessment tools for neuro-oncology and standardized documentation of patients' distress, shared interprofessional training, and reflection on the professional and personal challenges faced when confronted with spiritual care in neuro-oncology require further improvement and training.
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Actitud del Personal de Salud , Investigación Cualitativa , Espiritualidad , Humanos , Estudios Transversales , Femenino , Masculino , Persona de Mediana Edad , Adulto , Alemania , Neoplasias Encefálicas/psicología , Médicos/psicología , Encuestas y Cuestionarios , Enfermeras y Enfermeros/psicología , Estrés Psicológico/etiologíaRESUMEN
PURPOSE: Patients with brain cancer and painful symptoms of the disease experience heavy pressure and negative inner experiences, leading to a sense of stigma. Therefore, this study assessed the level of stigma in patients with brain cancer and analyzed the risk factors for stigma to analyze the underlying relationships among depression, social support, low self-esteem, and stigma. METHODS: Patients completed the Social Impact Scale, Self-rating Depression Scale, Rosenberg Self-Esteem Scale, Herth Hope Index, Social Support Rating Scale, and Self-Perceived Burden Scale. Multiple linear regression analysis was used to identify factors independently associated with stigma. Parallel mediation analysis was used to evaluate the mediating role of the relationship between psychoemotional factors and stigma. RESULTS: A multivariate linear regression analysis demonstrated significant associations between age (ß = - 0.189, P = 0.002), treatment (ß = 0.184, P = 0.003), self-esteem (ß = - 0.128, P = 0.046), depression (ß = 0.273, P < 0.001), hope (ß = - 0.217, P = 0.003), and self-perceived burden (ß = 0.260, P < 0.001) with brain cancer. It was observed that the social support received by brain cancer patients directly impacted their stigma (total effect, - 0.851, P = 0.001). Additionally, this relationship was influenced by depression and self-esteem through two distinct pathways. CONCLUSION: Increased stigma among brain cancer patients was found to be associated with severe depression, feelings of inferiority, diminished hope, and a heavy perceived burden. The structural equation modeling (SEM) revealed that social support negatively influenced stigma through depression and self-esteem. It is imperative to grasp patients' inner needs, implement psychological interventions, and cultivate a cancer-friendly social environment to prevent stigmatization and discrimination based on their patient status.
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Neoplasias Encefálicas , Depresión , Análisis de Mediación , Autoimagen , Estigma Social , Apoyo Social , Humanos , Estudios Transversales , Masculino , Femenino , Persona de Mediana Edad , Neoplasias Encefálicas/psicología , Depresión/psicología , Depresión/etiología , Adulto , Anciano , Factores de Riesgo , Escalas de Valoración Psiquiátrica , Encuestas y Cuestionarios , EsperanzaRESUMEN
BACKGROUND: The wellbeing of a child with brain tumour is affected by several factors. We present the first investigation of quality of life and family functioning in a parent and child across the first 12 months after diagnosis, examining potential factors to guide the provision of psychosocial resources to families who most need them. PROCEDURE: Data were collected from parents/carers in Queensland, Australia, from 2020 to 2023. Child (parent/carer-proxy reported) and carer quality of life was assessed across three timepoints (repeated measures analysis of variance [ANOVA]) and by five potential co-variates (mixed between-within ANOVA). Family functioning was assessed across two timepoints (repeated-measures t-test), and by potential co-variates (repeated measures ANOVA). Univariate relationships were explored with Pearson's correlation coefficient; significant relationships were entered into multiple regression models. RESULTS: Ninety-six diverse families were represented. Quality of life (child, carer) and family functioning did not change across time. Children from households with lower income reported worse cognitive difficulties (p = .023) and pain and hurt (p = .013) than those from a higher income. Caregiver quality of life was poorer for those whose child had received chemotherapy and/or radiation, was aged less than 4 years at diagnosis, and had a lower household income. At 12 months, caregiver quality of life was correlated with family functioning (r = -.45, p < .001), with positive adaptation being a significant key predictor (beta = -.66, p < .005). CONCLUSIONS: The following factors indicate a need for increased early psychosocial support: cognitive difficulties, aged <4 years at diagnosis, receiving chemotherapy and/or radiation, and low household income.
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Neoplasias Encefálicas , Calidad de Vida , Humanos , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Masculino , Femenino , Niño , Estudios Longitudinales , Preescolar , Cuidadores/psicología , Adolescente , Estudios de Seguimiento , Adulto , Padres/psicología , Lactante , PronósticoRESUMEN
Limited research has compared cognition of people with non-central nervous system metastatic cancer (NCM) vs. metastatic brain cancer (BM). This prospective cross-sectional study was comprised 37 healthy controls (HC), 40 NCM, and 61 BM completing 10 neuropsychological tests. The NCM performed below HCs on processing speed and executive functioning tasks, while the BM group demonstrated lower performance across tests. Tasks of processing speed, verbal fluency, and verbal memory differentiated the clinical groups (BM < NCM). Nearly 20% of the NCM group was impaired on at least three neuropsychological tests whereas approximately 40% of the BM group demonstrated the same level of impairment.
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Neoplasias Encefálicas , Disfunción Cognitiva , Pruebas Neuropsicológicas , Humanos , Masculino , Neoplasias Encefálicas/secundario , Neoplasias Encefálicas/psicología , Femenino , Persona de Mediana Edad , Disfunción Cognitiva/etiología , Estudios Transversales , Estudios Prospectivos , Estudios de Casos y Controles , Anciano , Adulto , Función EjecutivaRESUMEN
BACKGROUND: Meningiomas are the most common type of primary brain tumor, originating from the meninges - the protective membranes that surround the brain and spinal cord. Several well-studied risk factors for meningiomas include gender, age, radiation exposure, genetic factors, and hormonal factors. Moreover, the influence of a person's psycho-emotional stateon their overall health and mental well-being, specifically stress, iscurrently a significant and relevant topic of discussion. AIMS: This case-control study aimed to study the association between perceived stress, chronic stress, and meningioma in adult patients. METHODS AND RESULTS: The study included cases, which comprised adult patients with histologically confirmed meningioma, and controls, consisting of adult patients with no history of brain cancer. Data collection involved the use of three types of questionnaires. The first questionnaire focused on patients' personal information, geographic factors, and lifestyle habits. Two additional questionnaires "The Perceived Stress Scale" and "The Chronic Stress Scale" were employed to assess perceived stress and chronic stress. The questioning was conducted by a neurologist. Microsoft Excel and Stata 14 were used for the data analysis. Overall, 148 questionnaires were completed and included in the analyses. The average age of participants was 45.60 ± 13.90 years. Females outnumbered males in both groups. Patients with meningioma diagnosis had a higher level of perceived high stress compared to those without meningioma (p = .045). Respondents without a diagnosis of meningioma have reported having more chronic stress in general and ambient problems (p = .004), financial issues (p = .006), work (p < .001), non-employment (p = .008), love and marriage (p < .001), isolation (p < .001), and residence (p < .001). Patients with meningioma, however, had less chronic stress compared to meningioma-free patients. CONCLUSION: This study revealed no discernible connection between stress and meningioma within our study sample. Further research with matched case-control methodology with a larger sample size is warranted to thoroughly evaluate the potential role of stress in patients with meningioma.
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Neoplasias Encefálicas , Meningioma , Estrés Psicológico , Humanos , Estrés Psicológico/complicaciones , Meningioma/complicaciones , Meningioma/psicología , Neoplasias Encefálicas/etiología , Neoplasias Encefálicas/psicología , Estudios de Casos y Controles , Encuestas y Cuestionarios , Masculino , Femenino , Adulto , Persona de Mediana Edad , Anciano , KazajstánRESUMEN
OBJECTIVE: The COVID-19 pandemic affected neuro-oncological patients and their caregivers regarding tumor care and emotional functioning, including Quality of Life (QoL). This study aimed to understand how COVID-19 affected their psychological state and the relations between patients and health personnel in neuro-oncology. METHODS: A cross-sectional study was conducted on neuro-oncological patients and their caregivers. RESULTS: A total of 162 patients and 66 caregivers completed the questionnaire. Altogether, 37.5% of patients perceived a greater risk of contracting COVID-19 compared to the general population. On a 0-10 scale, the patients' tumor-related anxiety score was 5.8, and their COVID-19-related score was 4.6. The caregivers reported 7.7 and 5.5, respectively. QoL was described as at least good in 75% of both patients and caregivers; the caregivers' care burden increased in 22.7% of cases during the pandemic, with no correlation with QoL. Future perception often changed, both in patients and caregivers. In 18% of cases, the cancer treatment schedule was changed, either by patient decision or by medical decision. However, 93.5% of patients were satisfied with their overall care. CONCLUSIONS: A considerable proportion of patients and caregivers still perceived the tumor disease as more burdensome than the pandemic, and their future as more uncertain. Such data suggest the need to build a productive alliance between patients and health professionals.
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COVID-19 , Cuidadores , Calidad de Vida , Humanos , COVID-19/epidemiología , COVID-19/psicología , Cuidadores/psicología , Estudios Transversales , Masculino , Femenino , Persona de Mediana Edad , Anciano , Adulto , Encuestas y Cuestionarios , SARS-CoV-2 , Ansiedad , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapiaRESUMEN
BACKGROUND: Illness-related communication and depressive symptoms within families may play an important role in caregivers' ability to accurately understand patients' symptom burden. We examined the associations between these psychosocial factors and symptom accuracy in patients with glioma and their family caregivers. METHODS: Patients and caregivers (n = 67 dyads) completed measures of depressive symptoms (CES-D), illness communication (CICS), and QOL (SF-36). Patients reported on their own cancer-related symptoms (MDASI-BT) while caregivers reported on their perception of the patients' symptoms (i.e., proxy reporting). Paired t-tests and difference scores were used to test for agreement (absolute value of difference scores between patients and caregiver proxy symptom and interference severity reports) and accuracy (caregiver underestimation, overestimation, or accurate estimation of patient symptom and interference severity). RESULTS: Clinically significant disagreement was found for all means scores of the MDASI-BT subscales except for gastrointestinal symptoms and general symptoms. Among caregivers, 22% overestimated overall symptom severity and 32% overestimated overall symptom interference. In addition, 13% of caregivers underestimated overall symptom severity and 21% of caregivers underestimated overall symptom interference. Patient illness communication was associated with agreement of overall symptom severity (r=-0.27, p = 0.03) and affective symptom subscale (r=-0.34, p < 0.01). Caregivers' reporting of illness communication (r=-0.33, p < 0.01) and depressive symptoms (r = 0.46, p < 0.0001) were associated with agreement of symptom interference. Caregiver underestimating symptom severity was associated with lower patient physical QOL (p < 0.01); caregiver underestimating symptom interference was associated with lower patient physical QOL (p < 0.0001) and overestimating symptom interference was associated with lower patient physical QOL (p < 0.05). Patient and caregiver mental QOL was associated with caregiver underestimating (p < 0.05) and overestimating (p < 0.05) symptom severity. CONCLUSION: The psychosocial context of the family plays an important role in the accuracy of symptom understanding. Inaccurately understanding patients experience is related to poor QOL for both patients and caregivers, pointing to important targets for symptom management interventions that involve family caregivers.
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Cuidadores , Depresión , Glioma , Apoderado , Calidad de Vida , Humanos , Cuidadores/psicología , Masculino , Femenino , Persona de Mediana Edad , Glioma/psicología , Calidad de Vida/psicología , Depresión/psicología , Depresión/diagnóstico , Adulto , Anciano , Autoinforme , Neoplasias Encefálicas/psicología , Comunicación , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
BACKGROUND: There are limited data available, particularly in low- and middle-income countries (LMICs), on the long-term quality of life (QoL) and family functioning of primary caregivers of children and young people (CYPs) affected by primary brain tumors (PBTs). This study aimed to assess the factors associated with the mean change in QoL and family functioning scores of primary caregivers of CYP patients with PBTs 12 months posttreatment. METHODS: This prospective cohort study enrolled CYPs aged 5-21 years with newly diagnosed PBTs and their primary caregivers. The study was carried out between November 2020 and July 2023. The primary caregivers of CYPs were recruited from two major tertiary care centers in Karachi, Pakistan. The primary caregivers QoL were assessed by the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. The assessment was undertaken by a psychologist at the time of diagnosis and 12 months posttreatment. The data were analyzed with STATA version 12. RESULTS: Forty-eight CYPs with newly diagnosed PBTs and their primary caregivers (46 mothers and 2 fathers) were enrolled. At 12 months posttreatment, 25 (52%) CYPs and their primary caregivers (mothers) were reassessed, and 23 (48%) were lost to follow-up. On multivariable analysis, a significant decrease in mothers' mean 12-month posttreatment QoL and family functioning scores was associated with CYP having posttreatment seizures (beta= -10.2; 95% CI: -18.4 to -2.0) and with the financial burden associated with the CYP's illness (beta= -0.3; 95% CI: -0.4 to -0.1). However, in those cases where CYP had higher posttreatment quality of life scores (beta = 0.4; 95% CI = 0.1, 0.6) and posttreatment higher verbal intelligence scores (beta = 0.1; 95% CI = 0.01, 0.3), the mothers' QoL and family functioning scores were significantly greater. CONCLUSION: We found a significant decrease in QoL of mothers who had a high financial burden and whose CYP had posttreatment seizures. However, those whose CYPs had higher posttreatment verbal intelligence scores and quality of life scores had significantly greater QoL scores. Identification of the factors that influence primary caregivers QoL has the potential to aid in the development of targeted strategies to alleviate stressors and improve the overall quality of life for primary caregivers and their children who are at high risk.
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Neoplasias Encefálicas , Cuidadores , Calidad de Vida , Humanos , Pakistán , Cuidadores/psicología , Femenino , Niño , Estudios Prospectivos , Masculino , Adolescente , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Preescolar , Adulto JovenRESUMEN
Structural brain network topology can be altered in case of a brain tumor, due to both the tumor itself and its treatment. In this study, we explored the role of structural whole-brain and nodal network metrics and their association with cognitive functioning. Fifty WHO grade 2-3 adult glioma survivors (> 1-year post-therapy) and 50 matched healthy controls underwent a cognitive assessment, covering six cognitive domains. Raw cognitive assessment scores were transformed into w-scores, corrected for age and education. Furthermore, based on multi-shell diffusion-weighted MRI, whole-brain tractography was performed to create weighted graphs and to estimate whole-brain and nodal graph metrics. Hubs were defined based on nodal strength, betweenness centrality, clustering coefficient and shortest path length in healthy controls. Significant differences in these metrics between patients and controls were tested for the hub nodes (i.e. n = 12) and non-hub nodes (i.e. n = 30) in two mixed-design ANOVAs. Group differences in whole-brain graph measures were explored using Mann-Whitney U tests. Graph metrics that significantly differed were ultimately correlated with the cognitive domain-specific w-scores. Bonferroni correction was applied to correct for multiple testing. In survivors, the bilateral putamen were significantly less frequently observed as a hub (pbonf < 0.001). These nodes' assortativity values were positively correlated with attention (r(90) > 0.573, pbonf < 0.001), and proxy IQ (r(90) > 0.794, pbonf < 0.001). Attention and proxy IQ were significantly more often correlated with assortativity of hubs compared to non-hubs (pbonf < 0.001). Finally, the whole-brain graph measures of clustering coefficient (r = 0.685), global (r = 0.570) and local efficiency (r = 0.500) only correlated with proxy IQ (pbonf < 0.001). This study demonstrated potential reorganization of hubs in glioma survivors. Assortativity of these hubs was specifically associated with cognitive functioning, which could be important to consider in future modeling of cognitive outcomes and risk classification in glioma survivors.
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Neoplasias Encefálicas , Encéfalo , Supervivientes de Cáncer , Cognición , Glioma , Humanos , Glioma/psicología , Glioma/diagnóstico por imagen , Glioma/patología , Femenino , Masculino , Adulto , Persona de Mediana Edad , Neoplasias Encefálicas/diagnóstico por imagen , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/patología , Supervivientes de Cáncer/psicología , Encéfalo/diagnóstico por imagen , Encéfalo/patología , Red Nerviosa/diagnóstico por imagen , Estudios de Casos y Controles , Imagen de Difusión Tensora/métodos , Imagen de Difusión por Resonancia MagnéticaRESUMEN
OBJECTIVE: Survivors of pediatric brain tumors (SPBT) are at risk for social deficits, fewer friendships, and poor peer relations. SPBT also experience reduced brain connectivity via microstructural disruptions to white matter from neurological insults. Research with other populations implicates white matter connectivity as a key contributor to poor social functioning. This case-controlled diffusion-weighted imaging study evaluated structural connectivity in SPBT and typically developing controls (TDC) and associations between metrics of connectivity and social functioning. METHODS: Diffusion weighted-imaging results from 19 SPBT and 19 TDC were analyzed using probabilistic white matter tractography. Survivors were at least 5 years post-diagnosis and 2 years off treatment. Graph theory statistics measured group differences across several connectivity metrics, including average strength, global efficiency, assortativity, clustering coefficient, modularity, and betweenness centrality. Analyses also evaluated the effects of neurological risk on connectivity among SPBT. Correlational analyses evaluated associations between connectivity and indices of social behavior. RESULTS: SPBT demonstrated reduced global connectivity compared to TDC. Several medical factors (e.g., chemotherapy, recurrence, multimodal therapy) were related to decreased connectivity across metrics of integration (e.g., average strength, global efficiency) in SPBT. Connectivity metrics were related to peer relationship quality and social challenges in the SPBT group and to social challenges in the total sample. CONCLUSIONS: Microstructural white matter connectivity is diminished in SPBT and related to neurological risk and peer relationship quality. Additional neuroimaging research is needed to evaluate associations between brain connectivity metrics and social functioning in SPBT.
Asunto(s)
Neoplasias Encefálicas , Supervivientes de Cáncer , Sustancia Blanca , Humanos , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/diagnóstico por imagen , Neoplasias Encefálicas/patología , Femenino , Masculino , Sustancia Blanca/diagnóstico por imagen , Sustancia Blanca/patología , Niño , Adolescente , Supervivientes de Cáncer/psicología , Estudios de Casos y Controles , Imagen de Difusión por Resonancia Magnética , Imagen de Difusión Tensora , Encéfalo/diagnóstico por imagen , Encéfalo/patología , Conducta Social , Adulto Joven , Vías Nerviosas/diagnóstico por imagen , Vías Nerviosas/patologíaRESUMEN
PURPOSE: The aim of this study was to explore patients' experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals' preferences. There is a knowledge gap of successful approaches to support patients' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. METHOD: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. FINDINGS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors' choice, and feeling selected for treatment. CONCLUSION: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process.
Asunto(s)
Neoplasias Encefálicas , Toma de Decisiones , Participación del Paciente , Terapia de Protones , Investigación Cualitativa , Humanos , Femenino , Masculino , Terapia de Protones/métodos , Persona de Mediana Edad , Anciano , Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/psicología , Adulto , Anciano de 80 o más Años , Prioridad del Paciente , Entrevistas como Asunto , Grupo de Atención al Paciente/organización & administraciónRESUMEN
PURPOSE: Diffuse low-grade gliomas (dLGG) often have a frontal location, which may negatively affect patients' executive functions (EF). Being diagnosed with dLGG and having to undergo intensive treatment can be emotionally stressful. The ability to cope with this stress in an adaptive, active and flexible way may be hampered by impaired EF. Consequently, patients may suffer from increased mental distress. The aim of the present study was to explore profiles of EF, coping and mental distress and identify characteristics of each profile. METHODS: 151 patients with dLGG were included. Latent profile analysis (LPA) was used to explore profiles. Additional demographical, tumor and radiological characteristics were included. RESULTS: Four clusters were found: 1) overall good functioning (25% of patients); 2) poor executive functioning, good psychosocial functioning (32%); 3) good executive functioning, poor psychosocial functioning (18%) and; 4) overall poor functioning (25%). Characteristics of the different clusters were lower educational level and more (micro)vascular brain damage (cluster 2), a younger age (cluster 3), and a larger tumor volume (cluster 4). EF was not a distinctive factor for coping, nor was it for mental distress. Maladaptive coping, however, did distinguish clusters with higher mental distress (cluster 3 and 4) from clusters with lower levels of mental distress (cluster 1 and 2). CONCLUSION: Four distinctive clusters with different levels of functioning and characteristics were identified. EF impairments did not hinder the use of active coping strategies. Moreover, maladaptive coping, but not EF impairment, was related to increased mental distress in patients with dLGG.
Asunto(s)
Adaptación Psicológica , Neoplasias Encefálicas , Función Ejecutiva , Glioma , Distrés Psicológico , Humanos , Función Ejecutiva/fisiología , Glioma/psicología , Glioma/patología , Masculino , Femenino , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/patología , Adaptación Psicológica/fisiología , Adulto , Persona de Mediana Edad , Resiliencia Psicológica , Anciano , Estrés Psicológico/psicología , Clasificación del Tumor , Adulto Joven , Pruebas NeuropsicológicasRESUMEN
Cognitive functioning is increasingly considered when making treatment decisions for patients with a brain tumor in view of a personalized onco-functional balance. Ideally, one can predict cognitive functioning of individual patients to make treatment decisions considering this balance. To make accurate predictions, an informative representation of tumor location is pivotal, yet comparisons of representations are lacking. Therefore, this study compares brain atlases and principal component analysis (PCA) to represent voxel-wise tumor location. Pre-operative cognitive functioning was predicted for 246 patients with a high-grade glioma across eight cognitive tests while using different representations of voxel-wise tumor location as predictors. Voxel-wise tumor location was represented using 13 different frequently-used population average atlases, 13 randomly generated atlases, and 13 representations based on PCA. ElasticNet predictions were compared between representations and against a model solely using tumor volume. Preoperative cognitive functioning could only partly be predicted from tumor location. Performances of different representations were largely similar. Population average atlases did not result in better predictions compared to random atlases. PCA-based representation did not clearly outperform other representations, although summary metrics indicated that PCA-based representations performed somewhat better in our sample. Representations with more regions or components resulted in less accurate predictions. Population average atlases possibly cannot distinguish between functionally distinct areas when applied to patients with a glioma. This stresses the need to develop and validate methods for individual parcellations in the presence of lesions. Future studies may test if the observed small advantage of PCA-based representations generalizes to other data.
Asunto(s)
Neoplasias Encefálicas , Cognición , Glioma , Imagen por Resonancia Magnética , Análisis de Componente Principal , Humanos , Glioma/patología , Glioma/psicología , Glioma/diagnóstico por imagen , Neoplasias Encefálicas/diagnóstico por imagen , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/patología , Neoplasias Encefálicas/cirugía , Masculino , Femenino , Persona de Mediana Edad , Análisis de Componente Principal/métodos , Cognición/fisiología , Adulto , Imagen por Resonancia Magnética/métodos , Anciano , Pruebas Neuropsicológicas , Encéfalo/diagnóstico por imagen , Encéfalo/patologíaRESUMEN
BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.