What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require?

Background: Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with. Methods: Responses from 188 carers of patients with HGG participating in a randomized controlled trial of the Care-IS intervention were analyzed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyze the qualitative data and observe trends across participant responses. Results: Five overarching themes were identified: carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression, and processing and supporting end-of-life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end-of-life care. Conclusions: Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centered on carer needs, their changed circumstances, living with uncertainty, and care transition.

Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention.

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.

Eliciting the views of left breast cancer patients' receiving deep inspiration breath hold radiation therapy to inform the design of multimedia education and improve patient-centred care for prospective patients.

INTRODUCTION: The currently accepted best practice radiation treatment for left breast cancer patients is Deep Inspiration Breath Hold (DIBH) where patients hold a deep breath to reduce late cardiac and pulmonary effects from treatment. DIBH can be challenging and induce or exacerbate anxiety in patients due to the perceived pressure to reduce radiation treatment side effects. This study explored the experiences of patients treated with Deep Inspiration Breath Hold Radiation Therapy (DIBH-RT) to improve patient-centred care and inform the design of multimedia educational tools for future patients undergoing DIBH. METHODS: This descriptive qualitative study was underpinned by a social constructivist approach to create new educational and patient care approaches based on previous patients' experiences. Semi-structured interviews were conducted with patients who had completed DIBH-RT for breast cancer. Data was analysed with reflexive thematical analysis. RESULTS: Twenty-two patients were interviewed with five key themes identified: (1) informational needs, (2) care needs, (3) autonomy, (4) DIBH performance influencers and (5) other centredness. Recommendations were derived from these themes to improve future treatments of DIBH patients. These recommendations revolved around improvements to education, patient-centred care and strategies to improve self-efficacy with breath holding. CONCLUSION: Patients offer a wealth of knowledge regarding their lived experiences with treatment which can enhance future patients' experiences if incorporated into their education and care. Eliciting patients' views of their DIBH-RT treatment highlighted the need to improve patient self-efficacy with DIBH through familiarity with their planned treatment from new multimedia education, and foster patient care to enhance their experience.

Grandparents' Experiences of Childhood Cancer: A Qualitative Study.

A child's cancer diagnosis has a significant impact on the lives of grandparents. Grandparents experience the stress of worrying about both their adult children and their grandchildren. Our study aimed to explore the lived experience of grandparents of children diagnosed with cancer. A qualitative design involving semi-structured interviews was used and data were analyzed using reflexive thematic analysis. Twenty grandparents aged 41 to 77 years were interviewed. Six themes were identified: (a) Diagnosis: changing everything; (b) Aspects of treatment: A different world; (c) Sandwich generation; (d) Family: Worrying about everyone; (e) Balancing work; and (f) It's like suddenly a door opens. Our study demonstrates the life-changing impact of having a grandchild diagnosed with cancer. It expands on existing knowledge and shows that, due to an aging population and demographic changes, some grandparents must juggle the demands of caring for aging family members and working while supporting adult children and grandchildren.

Supporting paediatric patients to receive radiation therapy without sedation or general anaesthetic.

Many paediatric patients experience anxiety and distress when undergoing radiation therapy and, as a result, are often anaesthetised or sedated (A/S) so that they remain still. The practice of using A/S has implications for the child, the family and the health system. Building on the article by McCoola et al. (DOI 10.1002/jmrs.705), this editorial discusses approaches to improving paediatric patients' and their families' experiences of radiation therapy by reducing the need for A/S. Interventions need to be underpinned by theory and adopt robust research methods.

A Conceptual Model Depicting How Children Are Affected by Parental Cancer: A Constructivist Grounded Theory Approach.

Cancer patients' children are vulnerable to psychosocial and behavioural issues. The mechanisms underlying how children are affected by their parent's diagnosis are unknown, warranting further research. This study investigated how children are affected by their parent's cancer diagnosis and provides a theoretical model conceptualising this experience. Informed by methods of grounded theory, embedded within a social constructivist framework, 38 informants (15 health professionals (HPs); 11 parents; 12 children (5 to 17 years)) were interviewed using a semi-structured format. Three themes were identified: (i) children were worried and distressed because they felt alone, (ii) parents were unable to tend to children's needs because they were overwhelmed by practical factors, and (iii) HPs were not detecting children due to barriers that affected their visibility in clinical settings. The proposed Alexander's Children's Cancer Communication (ACCC) Model and clinical recommendations made can be used to guide the clinical practice and development of future intervention research.

Psychosocial interventions for personality and behavior changes in adults with a brain tumor: A scoping review.

Background: The objective of this scoping review was to describe the intervention characteristics and effectiveness of psychosocial interventions aimed at managing personality and behavior changes in people with brain tumors. A secondary objective was to explore if these interventions had an impact on outcomes for carers. Personality and behavior changes considered included aggression, apathy, paranoia, disinhibition, and emotional lability. Methods: This review was conducted following the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. Searches were conducted in PsycINFO, CINAHL, Medline (Ovid), and Scopus. We synthesized studies published from 1996 to 2022 that evaluated interventions to manage brain tumor related personality and behavioral changes in adults. A data extraction tool were used based on the Joanna Briggs Institute template. Results are presented in a summary table and a narrative synthesis was conducted. Results: Three thousand and five hundred and ninety-four records were screened. Title and abstract screening resulted in 29 potentially eligible studies. Full screening excluded 24 articles and 5 interventions met the inclusion criteria. The interventions were diverse in duration, delivery modality, setting, and participation (eg, the patient individually or patient and carer). The interventions reported improvements in the targeted personality and behavior change symptoms for patients with primary brain tumors. Four studies included a measure of personality and behavior change symptoms and two studies included a measure of outcomes for carers and reported improvements in carer knowledge and a reduction in carer distress. All studies sampled fewer than 100 participants. Studies had limited follow-up data and different tools were used to assess the presence and nature of personality and behavior changes. Conclusions: There is a dearth of psychosocial interventions to support patients and their carers to manage brain tumor related personality and behavior changes.

Exploring the clinical utility of a brief screening measure of unmet supportive care needs in people with high-grade glioma.

Background: People living with high-grade glioma (HGG) have diverse and complex needs. Screening aims to detect patients with some level of unmet need requiring triaging and further assessment. However, most existing measures of unmet need are not suitable for screening in this population due to their length. We aimed to explore the clinical utility of a brief screening tool (SCNS-ST9) in people with HGG in detecting unmet needs. Methods: Secondary analysis of data collected in a prospective cohort study of 116 people with HGG who completed the Supportive Care Needs Survey (SCNS-SF34) and a brain cancer-specific needs survey (BrTSCNS) during chemoradiation (T1) and 6 months later (T2). The SCNS-ST9 contains a subset of 9 items from the SCNS-SF34. Data analysis determined the number of individuals with unmet needs on the SCNS-SF34 and the BrTSCNS, not identified as having some level of need by the SCNS-ST9. Results: Overall, 3 individuals (T1: 2.6% [3/116]; T2: 4.8% [3/63]) at each time point reported other unmet needs on the SCNS-SF34 that were missed by the SCNS-ST9. Domain-specific screening items missed a higher proportion of individuals (3.2%-26%), particularly in the psychological and health systems domains. Only 1 individual with brain cancer-specific needs was missed by SCNS-ST9 overall. Conclusion: Findings demonstrate the sensitivity and clinical utility of a brief screening tool (SCNS-ST9) of unmet needs in people with HGG. Routine use of this screening tool, supported by clinical pathways, may improve access to support services, potentially reducing the burden of disease for these patients.

Mask-related anxiety and distress during radiation therapy for head and neck cancer.

Some patients experience mask-related anxiety and distress when undergoing radiation therapy for head and neck cancer. Building on the paper by Forbes et al (doi.org/10.1002/jmrs.658) this editorial discusses techniques to implement to improve the patient experience through education and support.

A feasibility, safety, and efficacy evaluation of supervised aerobic and resistance exercise for patients with glioblastoma undertaking adjuvant chemoradiotherapy.

Background: While therapeutically effective, chemoradiotherapy treatment for high-grade glioma (glioblastoma) is often accompanied by side effects. Exercise has been demonstrated to alleviate the adverse effects of such treatments in other cancers. We aimed to evaluate the feasibility and preliminary efficacy of supervised exercise incorporating autoregulation. Methods: Thirty glioblastoma patients were recruited, five declined exercise and 25 were provided with a multimodal exercise intervention for the duration of their chemoradiotherapy treatment. Patient recruitment, retention, adherence to training sessions and safety were evaluated throughout the study. Physical function, body composition, fatigue, sleep quality, and quality of life were evaluated before and after the exercise intervention. Results: Eight of the 25 participants commencing exercise withdrew prior to completion of the study (32%). Seventeen patients (68%) demonstrated low to high adherence (33%-100%) and exercise dosage compliance (24%-83%). There were no reported adverse events. Significant improvements were observed for all trained exercises and lower limb muscle strength and function with no significant changes observed for any other physical function, body composition, fatigue, sleep, or quality of life outcomes. Conclusions: Only half of glioblastoma patients recruited were willing or able to commence, complete or meet minimum dose compliance for the exercise intervention during chemoradiotherapy indicating the intervention evaluated may not be feasible for part of this patient cohort. For those who were able to complete the exercise program, supervised, autoregulated, multimodal exercise was safe and significantly improved strength and function and may have prevented deterioration in body composition and quality of life.

Access to psychosocial support for people with brain tumor and family members: Healthcare professional perspectives.

OBJECTIVES: Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals. METHODS: Semi-structured interviews were conducted with 21 healthcare professionals working in hospital and community services supporting PwBT and their family members. Transcribed interviews were coded and analyzed thematically. RESULTS: The three major themes identified were: (1) Challenges in fitting people into the care system within existing pathways; (2) Benefits of longer-term care coordination and interdisciplinary connections; and (3) Brain tumor affects the whole family. Despite established psychosocial care pathways, service access varied and lacked continuity for individuals with lower-grade glioma and benign tumors across the illness trajectory. CONCLUSIONS: Healthcare professionals recognize the need for improved access to care coordination and multidisciplinary psychosocial care tailored to the varying needs of PwBT and their families.

'Beyond Cancer' Rehabilitation Program to Support Breast Cancer Survivors to Return to Health, Wellness and Work: Feasibility Study Outcomes.

More women are returning to work following breast cancer treatment. Our team designed 'Beyond Cancer', a multimodal rehabilitation program to support breast cancer survivors to return to work. This study aimed to determine the feasibility of the intervention from the breast cancer survivor, employer and occupational rehabilitation provider perspectives. The feasibility design focused on implementation, acceptability and preliminary indications of efficacy. Primary outcome measures included work status, work capacity and perceived support at work. Responses were compared with an historical usual care group of mixed cancer survivors. The tailored intervention was delivered over 33 weeks (on average) by trained occupational rehabilitation consultants. Eighty-four women with breast cancer (mean age = 50.8 years, SD = 8.24) who were unable to work in their pre-diagnosis capacity for >3 months participated. Results provided preliminary indications of efficacy for primary work outcomes, including work capacity relative to the historical usual care group, and some secondary biopsychosocial variables (physical fatigue, return to work expectations). The intervention was acceptable, demonstrated strong participant engagement and high satisfaction. Feasibility has been demonstrated for this multimodal intervention focused on returning to sustainable work for women with breast cancer. Future research is required with people diagnosed with other cancer types to demonstrate broader implementation.

Bereavement outcomes of carers of patients with high grade glioma: Experiences of support before and after the death.

Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death.

Fathers' Experiences of Childhood Cancer: A Phenomenological Qualitative Study.

Research has shown differences in how fathers and mothers respond to a child's cancer diagnosis. Previous studies have highlighted that sociocultural norm shape fathers' experiences of their child's cancer diagnosis. Our phenomenological qualitative study aimed to examine the lived experiences of fathers whose children have been diagnosed with cancer and explore the impact of sociocultural gender roles. Fathers whose children were currently receiving treatment or had completed treatment in the previous 15 months were recruited from across Australia. Twenty-one fathers were interviewed. Five themes were identified: (a) Your world falls apart: Diagnosis and treatment; (b) Care for the child: Just the way it is; (c) Keeping strong: Finding ways to cope; (d) Employment: Practical and emotional support at work; and (e) Guilt, relief, and grief: Facing death. This study demonstrates the profound impact of a child's diagnosis on fathers and demonstrates that societal-cultural norms influence fathers' experience of childhood cancer.

Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.

BACKGROUND: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. METHODS: We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients' combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. RESULTS: We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model ß = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model ß = 4.35, 95% CI 2.08-6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. CONCLUSIONS: This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.

The Psychosocial Effect of Parental Cancer: Qualitative Interviews with Patients' Dependent Children.

BACKGROUND: Children living with parental cancer are at an increased risk for various psychosocial, emotional, and behavioural problems. However, research regarding how children are affected by their parent's diagnosis is still developing and patients' children are typically invisible in clinical practice. This study aimed to investigate how children are affected by their parent's cancer diagnosis, from children's perspectives. METHODS: Informed by methods of grounded theory and embedded within a social constructivist framework, twelve children (ranging from 5 to 17 years) living with a parent with cancer were interviewed using a semi-structured format assisted by a novel approach derived from play- and art-based developmental literature. RESULTS: Findings indicate that patients' children are constantly worried and distressed, and there are barriers that can be overcome to mitigate this. Four overarching themes were identified: (I) Feeling worried and distressed; (II) Comprehending their parent's cancer diagnosis; (III) Being disconnected from their supports; and (IV) Needing someone to talk to. CONCLUSIONS: Children experience considerable levels of ongoing worry and distress when a parent is diagnosed with cancer and have difficulties comprehending and articulating this. They also feel a level of disconnection from their usual support systems (e.g., parents) and are limited regarding who they can seek out and talk to. Mitigating children's ongoing worries and distress by promoting the availability and accessibility of parents and other supports to children, and reducing communication barriers between children and adults, should be a primary focus of psycho-oncology research and practice.

Return to valued activities: Survivors' experiences of adaptation and growth after treatment for head and neck cancer.

OBJECTIVE: The objective of this study was to explore the experiences of head and neck cancer (HNC) survivors who returned to valued activities to understand how they reconstruct their lives following HNC diagnosis and treatment. METHODS: A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with adults diagnosed with any type of HNC in the previous 6 years. Reflexive thematic analysis was used to identify themes. RESULTS: HNC presents a unique trauma following which some survivors navigate paths back to meaningful activities. The experiences of HNC survivors who adapted to life after treatment described internal and external change and development, identified by three themes; Mindfulness; Gratitude; and Adaptation. CONCLUSION: People diagnosed with HNC frequently experience lasting effects and other survivorship issues, however some survivors were able to return to valued activities and recreate a meaningful lifestyle reflecting the possibility of post traumatic growth. This study provides insight into the experiences of head and neck cancer survivors who were able to make meaning and find internal and external growth following treatment. These findings can be used to inform advanced communication skills training for oncology health professionals and psychoeducational courses for people diagnosed with head and neck cancer in the future.

Determining the Research Priorities for Adult Primary Brain Tumours in Australia and New Zealand: A Delphi Study with Consumers, Health Professionals, and Researchers.

The aim of this project was to determine research priorities, barriers, and enablers for adult primary brain tumour research in Australia and New Zealand. Consumers, health professionals, and researchers were invited to participate in a two-phase modified Delphi study. Phase 1 comprised an initial online survey (n = 91) and then focus groups (n = 29) which identified 60 key research topics, 26 barriers, and 32 enablers. Phase 2 comprised two online surveys to (1) reduce the list to 37 research priorities which achieved consensus (>75% 2-point agreement) and had high mean importance ratings (n = 116 participants) and (2) determine the most important priorities, barriers, and enablers (n = 90 participants). The top ten ranked research priorities for the overall sample and sub-groups (consumers, health professionals, and researchers) were identified. Priorities focused on: tumour biology, pre-clinical research, clinical and translational research, and supportive care. Variations were seen between sub-groups. The top ten barriers to conducting brain tumour research related to funding and resources, accessibility and awareness of research, collaboration, and process. The top ten research enablers were funding and resources, collaboration, and workforce. The broad list of research priorities identified by this Delphi study, together with how consumers, health professionals, and researchers prioritised items differently, and provides an evidence-based research agenda for brain tumour research that is needed across a wide range of areas.

Brain cancer patients' levels of distress and supportive care needs over time.

PURPOSE: This study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG). METHODS: In this prospective cohort study, participants completed surveys at three time points: before chemoradiotherapy, at 3 and 6 months. These included Distress Thermometer, Functional Assessment of Cancer/Brain Cancer Treatment-general (Fact-G/FACT-BR), Supportive Care Needs Scale (SF-34) and Brain Tumour Specific subscale. Patient survival time was also collected. Group-based trajectory modelling was performed. Multinominal logistic regression assessed variables associated with different distress trajectory groups. RESULTS: One hundred and sixteen participants completed assessments at baseline, 89 participants at 3 and 64 at 6 months. Four distress trajectory groups were identified; consistent low distress (18%), low to high distress (38%), high-to low distress (24%) and consistent high distress (19%). Younger participants tended to report decreased distress over time, whereas older participants reported consistently high distress. High distress trajectory participants had less education, lower physical wellbeing, more unmet needs, but higher functional wellbeing compared to the low to high distress trajectory. The number of unmet needs paralleled the patterns of distress over time. The highest unmet needs in people with HGG and high distress were disease specific changes in mental ability and physical side effects. CONCLUSION: This study demonstrates people with HGG experience ongoing distress and highlights a need for continuous distress and unmet needs screening and referrals.