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Background: Supported self-management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self-management support (SMS) for people living with a lower-grade glioma (LGG)-who often have complex support needs-are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG., Methods: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives., Results: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP-support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help-seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation., Conclusions: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self-management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG., Patient or Public Contribution: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Objective: To determine if cognition can be used to identify persons with cancer at high risk for the impaired ability to understand treatment decisions., Methods: The association between understanding treatment decisions and cognition was examined using data from 181 participants across four groups: 67 with brain metastasis, 41 with metastatic cancer that has not spread to the brain, 27 with malignant glioma, and 46 healthy controls. All diagnoses were made by board-certified oncologists and were verified histologically., Results: Results indicated that numerous cognitive functions were associated with the ability to understand treatment decisions in persons with cancer. The following proportion of participants demonstrated impaired understanding of treatment decisions in our three patient groups: approximately 51% malignant glioma, approximately 46% brain metastasis, and approximately 24% metastatic cancer. In a combined brain cancer group, we were able to use cognitive performance to predict the impaired ability to understand treatment decisions., Conclusions: An impaired ability to understand treatment decisions is prevalent in persons with brain cancer and persons with metastatic cancer. Performance on a brief cognitive battery can be used to help clinicians identify patients at particular risk for impaired medical decision making., (© 2019 John Wiley & Sons, Ltd.)

Background: Current estimates suggest that 75% of children diagnosed with a central nervous system (CNS) tumor will become 5-year survivors. However, survivors of childhood CNS tumors are at increased risk for long-term morbidity., Methods: To determine long-term neuropsychological and socioeconomic status (SES) outcomes, adult survivors of pediatric low-grade gliomas (n = 181) in the Childhood Cancer Survivor Study and a sibling comparison group that was frequency-matched by age and sex (n = 105) completed a comprehensive battery of standardized neuropsychological tests and an SES assessment. Multivariable regression models compared treatment-specific groups for neuropsychological and SES outcomes and evaluated associations with tumor location, age at diagnosis, sex, and age at evaluation., Results: In adjusted models, survivors treated with surgery and radiotherapy (surgery+RT; median age at diagnosis, 7 years; median age at assessment, 41 years) scored lower on estimated IQ than survivors treated with surgery only, who scored lower than siblings (surgery+RT, 93.9; surgery only, 101.2; siblings, 108.5; all P values <.0001). Survivors diagnosed at younger ages had low scores for all outcomes (P < .05) except for attention/processing speed. For SES outcomes, survivors treated with surgery+RT had lower occupation scores (odds ratio [OR], 2.6; 95% confidence interval [CI], 1.1-5.9), lower income (OR, 2.6; 95% CI, 1.3-5.0), and less education (OR, 2.1; 95% CI, 1.1-4.0) than those treated with surgery only., Conclusions: Decades after treatment, survivors treated with radiotherapy and at younger ages had poorer neuropsychological and SES outcomes. Lifelong surveillance of survivors of pediatric low-grade gliomas may be warranted as life events, stages, and transitions (employment, family, and aging) present new challenges and risks., (© 2019 American Cancer Society.)

Background: Low-grade glioma (LGG) is a type of brain tumour often situated in or near areas involved in language, sensory or motor functions. Depending on localization and tumour characteristics, language or cognitive impairments due to tumour growth and/or surgical resection are obvious risks. One task that may be at risk is writing, both because it requires intact language and memory function and because it is a very complex and cognitively demanding task. The most commonly reported language deficit in LGG patients is oral lexical-retrieval difficulties, and poor lexical retrieval would be expected to affect writing fluency., Aims: To explore whether writing fluency is affected in LGG patients before and after surgery and whether it is related to performance on tasks of oral lexical retrieval., Methods & Procedures: Twenty consecutive patients with presumed LGG wrote a narrative and performed a copy task before undergoing surgery and at 3-month follow-up using keystroke-logging software. The same tasks were performed by a reference group (N = 31). The patients were also tested using the Boston Naming Test (BNT) and word-fluency tests before and after surgery. Writing fluency was compared between the patients and the reference group, and between the patients before and after surgery. Relationships between performance on tests of oral lexical retrieval and writing fluency were investigated both before and after surgery., Outcome & Results: Different aspects of writing fluency were affected in the LGG patients both before and after surgery. However, when controlling for the effect of typing speed, the LGG group differed significantly from the reference group only in the proportion of pauses within words. After surgery, a significant decline was seen in production rate and typing speed in the narrative task, and a significant increase was seen in pauses before words. Strong positive relationships were found between oral lexical retrieval and writing fluency both before and after surgery., Conclusions & Implications: Although aspects of writing fluency were affected both before and after surgery, the results indicate that typing speed is an important factor behind the pre-surgery differences. However, the decline in overall productivity and the increase in pauses before words after surgery could be related to a lexical deficit. This is supported by the finding that oral lexical-retrieval scores were strongly correlated with writing fluency. However, further exploration is needed to identify the language and cognitive abilities affecting writing processes in LGG patients., (© 2018 The Authors International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

Objective: Malignant glioma (MG) is a devastating neuro-oncologic disease with almost invariably poor prognosis, yet many families facing malignant glioma have poor prognostic awareness (PA), or the awareness of the patient's incurable disease and shortened life expectancy. Accurate PA is associated with favorable medical outcomes at end-of-life for patients and psychosocial outcomes for informal caregivers (ICs) through bereavement. To date, however, no study has specifically examined PA among MG ICs and the information they receive that shapes their awareness., Methods: Thirty-two ICs of patients with malignant glioma completed a semi-structured assessment of their awareness of the incurability and life expectancy of their loved one's illness, and to understand their sources of prognostic information and preferences for communication of prognostic information., Results: Twenty-two (69%) ICs had full PA-awareness of the incurability of malignant glioma and accurate estimates of their loved ones' life expectancy. Twenty-three (72%) felt that prognostic information was extremely or very important to possess, and 16 (50%) desired more prognostic information. The majority of ICs received prognostic information from physicians and the Internet. Qualitative analyses revealed that many ICs had difficulty navigating medical encounters in which they concurrently wanted to elicit prognostic information from physicians and protect patients from such information., Conclusions: Accurate and timely PA is necessary for ICs to serve as critical members of health care teams. Interventions are needed to foster ICs' skills in navigating prognostic communication with patients and health care providers and thereby improve their ability to advocate for their loved one's wishes., (Copyright © 2017 John Wiley & Sons, Ltd.)

Previous reports on the patient perspective of daily life during a 1-year high-grade glioma (HGG) trajectory from the time of diagnosis are sparse. The aim of this longitudinal mixed methods study is to identify the specific needs and preferences for rehabilitation and supportive care and how it links with physical activity, psychological measures and health quality longitudinally over the first year after diagnosis among patients with HGG and their caregivers by integrating qualitative and quantitative findings. Using a longitudinal mixed methods design, patients with malignant glioma (n = 30) and their caregivers (n = 33) were interviewed and completed questionnaires (patients only) about physical activity level, anxiety/depression and quality of life five times during the 1-year period. Their needs and preferences included interventions designed to re-define hope after diagnosis, health promoting physical activities initiated early, psychological symptom management strategies, and life planning. Caregivers are committed to their caregiving role, but their engagement is nonetheless challenged over time by enormous caregiver burdens. The identified specific needs and preferences favour supportive care, education, information and rehabilitation. Guidelines attentive to these needs and implemented in clinical practice have the potential to improve patients' health-related quality of life and support caregivers by involving them more actively in care and management., (© 2018 The Authors. European Journal of Cancer Care Published by John Wiley & Sons Ltd.)

Neuro-oncological patients experience high symptom and psychosocial burden. The aim was to test feasibility and practicability of the Supportive Care Needs Survey Short Form (SCNS-SF34-G) and the SCNS-Screening Tool (SCNS-ST9) to assess supportive care needs of neuro-oncological patients in clinical routine. A total of 173 patients, most with a primary diagnosis of high-grade glioma (81%), were assessed first using SCNS-SF34-G in comparison to two well-established patient-reported outcome measures, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQC30 + QLQ-BN20) and Distress Thermometer (DT). In a follow-up assessment, SCNS-ST9 was used in a subgroup (n = 90). Questionnaires were completed either with personal guidance offered (group A) or by patients alone (group B). Feasibility was compared between instruments and groups for possible associations with patient and treatment-related factors. Missing values occurred in similar frequencies in all instruments. Errors in completion occurred in SCNS-SF34-G in 20% and in SCNS-ST9 in 16%; difficulties in completion were observed more often in SCNS-SF34-G and SCNS-ST9 (39%) compared to DT and EORTC (13%, p < .001). Distress was found to be associated with difficulties in completion of SCNS (OR 1.4, [95% CI 1.1-1.9], p = .013). SCNS-SF34 and SCNS-ST9 are suitable tools for glioma patients as long as personal guidance is offered., (© 2016 John Wiley & Sons Ltd.)

Objective: While neurocognitive functioning (NCF) and mood disturbance share a relationship with health-related quality of life (HRQOL), few studies have examined relationships between these constructs in glioma patients prior to treatment., Methods: Newly diagnosed patients with glioma in the left (N = 73; 49% glioblastoma) or right (N = 30; 57% glioblastoma) temporal lobe completed neuropsychological testing and self-report measures of HRQOL (Functional Assessment of Cancer Therapy (FACT)-General and Brain module) and mood (Beck Depression Inventory-Second Edition and State-Trait Anxiety Inventory)., Results: Verbal learning and memory, executive function, and language abilities were associated with various HRQOL scales. Stepwise linear regression showed that verbal learning predicted scores on the general well-being scale and brain module, processing speed predicted social well-being scores, and executive functioning predicted functional well-being scores on the FACT. Upper extremity strength also predicted scores on the functional well-being subscale and brain module. Mood was more strongly associated with HRQOL domains than NCF, with depressive symptoms accounting for a large proportion of variance across most subscales., Conclusions: In patients with temporal lobe glioma, depressive symptoms are strongly related to most aspects of HRQOL but not with NCF. NCF, specifically verbal learning and memory, executive functioning, and processing speed, also show direct relationships with numerous aspects of HRQOL. These findings underscore the importance of multimodal assessment of NCF and mood in this population. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)

Objective: To understand factors influencing the process of adjustment to a diagnosis of glioma., Methods: Twenty-six patients and 23 relatives took part in 80 in-depth qualitative interviews conducted at five key stages: before formal diagnosis, at start of treatment, on completion of treatment, 6 months post treatment, and post bereavement., Results: High levels of distress were reported, particularly preceding and following diagnosis. Many participants described lack of specific information in the early part of their illness and a lack of clarity about what was wrong and what was going to happen next. They often desired more procedural information, as well as information about their condition and treatments available, although there was variation in the timing of when people were ready to hear this. Receiving reassurance and support was essential to patients and their relatives to help them come to terms with their illness. This need was particularly acute during the early phase of the illness when distress and uncertainty were at a peak and lessened over time as people adjusted to their illness., Conclusions: Offering suitable information about what to expect early and frequently in a supportive way is much appreciated by patients. There is an important balance between ensuring that patients and their families are fully informed and fostering adaptive coping that allows for hope., (Copyright © 2012 John Wiley & Sons, Ltd.)

There is a paucity of knowledge for health-care professionals who come into contact with next of kin of persons diagnosed with low-grade gliomas. Therefore, the aim of this study was to explore the experience of being the next of kin of an adult person diagnosed with a low-grade glioma. Twenty-eight next of kin of persons with a low-grade glioma were interviewed. The data were subjected to qualitative content analysis. A quantitative data analysis was added to explore how the themes from the qualitative analysis occurred among different next of kin. Four main themes emerged: Extremely stressful emotions, Being invisible and neglected, Changed relations and roles, and Enabling strength in everyday life. The first of these occurred mainly in the early period of illness. This theme was especially predominant in the case of the patient's parents. The theme of Changed relations and roles occurred more often among next of kin some years after the person's diagnosis. The most statements occurred in all four themes were by female next of kin. Many next of kin requested emotional support for themselves and indicated that it is important that health-care staff should not forget them.

Purpose: To describe the co-occurring symptoms (depression, fatigue, pain, sleep disturbance, and cognitive impairment), quality of life (QoL), and functional status in patients with high-grade glioma., Design: Correlational, descriptive study of 73 participants with high-grade glioma in the U.S., Methods: Nine brief measures were obtained with a mailed survey. Participants were recruited from the online message board of The Healing Exchange BRAIN TRUST, a nonprofit organization dedicated to improving quality of life for people with brain tumors., Findings: Two symptom cluster models were examined. Four co-occurring symptoms were significantly correlated with each other and explained 29% of the variance in QoL: depression, fatigue, sleep disturbance, and cognitive impairment. Depression, fatigue, sleep disturbance, cognitive impairment, and pain were significantly correlated with each other and explained 62% of the variance in functional status., Conclusions: The interrelationships of the symptoms examined in this study and their relationships with QoL and functional status meet the criteria for defining a symptom cluster. The differences in the models of QoL and functional status indicates that symptom clusters may have unique characteristics in patients with gliomas.

The literature reveals no qualitative study concerning the consequences of low-grade glioma in adults. The aim of the present study was to describe perceived illness-related problems in persons with low-grade glioma and the coping used in everyday living. The study was cross-sectional within a well-defined population. A semi-structured qualitative interview was conducted with each of 39 persons, and the data were subjected to inductive content analysis. There was a wide range of perceived problems, mainly concerning bodily functions, memory, cognition, emotion, communication and perception. Several coping strategies emerged, the most frequent being searching for a solution, which was often related to memory and communication problems. One characteristic of communication was the creation of new words. Other common strategies were refraining from and avoiding and laughing and joking. Caring about self involved prioritizing of personal needs. A striving to feel a sense of solidarity within seeking social affinity was coping with a novel content. The study provides vivid narratives about previously unreported phenomena, conveying a deeper understanding. The variety and endurance of problems revealed verifies the need of support from several professionals, including in the form of out-patient post-medical care.

The state of current research in the psychosocial and neurocognitive functioning of primary brain tumor patients, particularly those with gliomas, is reviewed. Specific instruments that have been used to evaluate psychosocial and neurocognitive functioning in this population are reviewed. Suggestions are made, based on the review, of the most appropriate psychosocial and neurocognitive instruments to implement in clinical research. Finally, research pertaining to psychosocial and neurocognitive interventions is reviewed and suggestions for further research are outlined. Few studies have adequately addressed the cognitive and psychosocial functioning of brain tumor patients and have focused primarily on relatively insensitive measures of outcome, including IQ scores, performance status, and neurologic examinations. The use of well-accepted, psychometrically sound quality of life instruments and more specific tests of cognitive functioning need to be included in clinical trials since most current treatments have a limited effect on the length of survival. Thus, the main rationale for selecting a given brain tumor therapy may ultimately be related to its profile of neurotoxic side-effects and impact on quality of life.