Analysis of Internet-Based Search Patterns Utilized by Glioma Patients as Information Source.

The aim of this study is to assess the Internet usage pattern amongst glioma patients and to characterize its impact in their decision-making and clinical interactions. Glioma patients attending a tertiary cancer center between June and December 2019 were invited to participate in this study. A 26-item survey consisting of closed and open-ended questions was distributed with a unique identifier. Quantitative data were analyzed with descriptive statistics using SPSS Statistical package, and qualitative data with grounded theory approach. Thirty-two patients completed the survey. Demographics varied in age, time since diagnosis, glioma type, and level of education. Eighty-one percent were identified as "Internet users" who sought online glioma information. Google was the most popular search engine (96%), with "glioma" being the most frequent search term. The selection of websites often relied on perceived credibility and top search hits. The most searched topic was prognosis (73%). The majority of patients found that online information was easy to understand, and this did not vary significantly amongst age groups. Website quality was always assessed by 60% of patients. Only 62% patients found the Internet a useful resource, and 70% patients found it facilitated their understanding. Most patients discussed their Internet findings with a physician, largely regarding concerns about reliability. There is variable glioma information available online. Patients with glioma use the Internet as a resource, with variable impact on their interactions and decision-making. This information can be used by physicians, educators, and website developers to support glioma patients' needs.

The brain tumor not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century.

BACKGROUND: The Coronavirus Disease 2019 (COVID-19) pandemic has affected individuals as well as disease-specific brain tumor organizations. These organizations around the world exist to address unmet needs for patients and caregivers they serve. The direct impact of the pandemic on these organizations constitutes significant collateral damage. In order to better understand the effects of the COVID-19 pandemic on brain tumor organizations, the International Brain Tumour Alliance (IBTA) carried out an international survey to identify organizational changes induced by the virus and approaches adopted to address challenges. METHODS: A 37-question online survey consisting of categorical and qualitative questions was developed and circulated to 130 brain tumor organizations across the world. Seventy-seven organizations from 22 countries completed the survey (59% return rate). Descriptive statistics and content analysis were used to present the results. RESULTS: Responses fell into the following 3 categories: (1) organizational characteristics, (2) impact of COVID-19 on services, and (3) COVID-19 impact on financial and human resources within organizations. Although organizational characteristics varied, common concerns reported were activity disruption which impacted organizations' abilities to offer usual services and challenges to sustaining funding. Both financial and human resources were stressed, but integral adaptations were made by organizations to preserve resources during the pandemic. CONCLUSIONS: Although brain tumor organizations have been impacted by the COVID-19 pandemic, organizations quickly adjusted to this unprecedented global healthcare crisis. Nimble reactions and flexibility have been vital to organization sustainability. Innovative approaches are required to ensure organizations remain viable so that needs of brain tumor community at large are met.

Brain tumors and COVID-19: the patient and caregiver experience.

BACKGROUND: Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been canceled or delayed. The long-term effects of these drastic measures on brain tumor patients and caregivers are unknown. The purpose of this study is to better understand how COVID-19 has affected this vulnerable population on a global scale. METHODS: An online 79-question survey was developed by the International Brain Tumour Alliance, in conjunction with the SNO COVID-19 Task Force. The survey was sent to more than 120 brain tumor charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumor patients and caregivers. Responses were collected from April to May 2020 and subdivided by patient versus caregiver and by geographical region. RESULTS: In total, 1989 participants completed the survey from 33 countries, including 1459 patients and 530 caregivers. There were no significant differences in COVID-19 testing rates (P = .662) or positive cases for brain tumor patients between regions (P = .1068). Caregivers were significantly more anxious than patients (P ≤ .0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (P ≤ .0001). Patients from Europe experienced the most treatment delays (P = .0031). Healthcare providers, brain tumor charities, and not-for-profits were ranked as the most trusted sources of information. CONCLUSIONS: As a result of COVID-19, brain tumor patients and caregivers have experienced significant stress and anxiety. We must continue to provide accessible high-quality care, information, and support in the age of COVID-19.

Prospective analysis of patient reported symptoms and quality of life in patients with incurable lung cancer treated in a rapid access clinic.

INTRODUCTION: The Vancouver Rapid Access (VARA) clinic was designed to provide palliative radiotherapy and holistic care to patients with incurable lung cancer. Analysis of the pilot phase demonstrated improved radiotherapy wait-times and access to supportive services compared to standard practice. This study aims to prospectively assess the impact of the clinic on patient reported symptoms and quality of life. MATERIALS AND METHODS: Patient assessments are completed at baseline and by a telephone follow up four-weeks later using Likert scales adapted from the Edmonton Symptom Assessment System (scale 0-10) and European Organization for Research and Treatment of Cancer questionnaires (scale 1-4). Patient reported outcomes at follow-up are compared to baseline using wilcoxon signed-rank test for categorical variables and paired sample t-test for continuous variables. RESULTS: Baseline data was collected on 125 patients, 109 received palliative radiotherapy (87%). At the 4 week follow up, 22 patients had died. Seventy-one of the remaining 103 patients completed the follow-up questionnaire, resulting in a 69% response rate among survivors. The mean patient reported overall health score, improved from 4.8 to 6.1 (p<0.01). All respiratory symptoms except chest pain (p=0.06) were associated with a statistically significant improvement after the clinic, whereas all respiratory symptoms improved post radiotherapy. Mean bone pain scores decreased from 5.5 to 2.7 (p<0.01). Assessment of symptoms secondary to brain metastases is limited by small patient numbers. CONCLUSION: The VARA clinic provides timely access to palliative radiotherapy and supportive services resulting in improved patient reported outcomes. Despite a high symptom and disease burden, patients report improved overall health and palliation of respiratory symptoms and bony pain. The studies completed on the VARA clinic to date, continue to support its value in our center.

A Self-Administered Sleep Intervention for Patients With Cancer Experiencing Insomnia.

BACKGROUND: Sleep-wake disturbances are experienced by as many as 75% of patients with cancer and are associated with poor symptom management, lower functionality, and decreased quality of life. Although promising sleep interventions exist, they require extensive resources and time. OBJECTIVES: The objectives of this study were to develop a brief, self-administered sleep intervention and to evaluate the feasibility and potential efficacy of its implementation with adult patients with cancer who were about to receive, were receiving, or had received radiation therapy in an ambulatory cancer care setting. METHODS: Pre- and postintervention surveys and qualitative interviews were conducted with patients with cancer experiencing insomnia (N = 28) and receiving radiation treatment within the past six months. Patients received instruction on breathing, visualization, and intonation. Adherence and sleep quality were primary study outcomes. Analyses included descriptive statistics and repeated measure regression analysis. Thematic analysis was conducted on qualitative data. FINDINGS: Adherence to the sleep intervention was high (75%), and significant improvement was found in global sleep quality (p < 0.0001) regardless of level of adherence. Sleep onset latency (p = 0.0005), sleep duration (p = 0.0016), and sleep quality (p < 0.0001) were significantly improved. Age was significantly correlated with sleep quality (p = 0.0094), with older participants reporting greater benefit from the intervention. Participants reported that the intervention was easy to learn and implement and that it "calmed the mind."

A mixed method study of a peer support intervention for newly diagnosed primary brain tumour patients.

PURPOSE: The purpose of this pilot study was to investigate the impact of an intervention designed to enhance quality of life in newly diagnosed primary brain tumour (PBT) patients. The intervention involved a structured, one time meeting between newly diagnosed PBT patients and trained volunteer "veteran" PBT patients. METHODS: Two volunteers met for a single, one-on-one meeting with a total of 10 newly diagnosed PBT patients. A combination of questionnaires and interviews were used to investigate the impact of the intervention for both the new patients and the volunteers. RESULTS: The intervention appeared to be of substantial value for both groups of participants. Analysis revealed that the newly diagnosed patients experienced a range of benefits, including those related to the themes of: increased hope, valued guidance, hearing what it's really like, overcoming aloneness, and receiving a wake up call to what matters. Only relatively minor adverse effects and challenges were reported. CONCLUSIONS: The findings provide initial evidence that the developed intervention has the potential to be a safe, useful means of enhancing psycho-social well-being in newly diagnosed PBT patients.Further investigation into the potential of one-to-one, peer support for brain tumour patients is an important research priority.

The Vancouver rapid access clinic for palliative lung radiation, providing more than just rapid access.

PURPOSE: The Vancouver Rapid Access (VARA) clinic aimed to deliver urgent palliative radiotherapy (RT) and holistic care to patients with newly diagnosed incurable lung cancer. The purpose of this paper is to describe the 9-month pilot phase of the clinic and to compare its efficacy to standard practice. METHODS: A multidisciplinary team performed the initial consult, and if appropriate, the patient received RT the same day and was connected with supportive services as required. Patient and treatment details were prospectively collected. A retrospective chart review of similar patients in standard practice 1 year prior to VARA was performed. Variables compared between VARA and standard practice included RT wait times and supportive service referrals. RESULTS: During the pilot phase, 58 patients were assessed. Forty percent were inpatients, and 62% had an ECOG 2 or higher. Fifty-four patients received RT; the majority (72%) received RT on the same day as their consultation, compared to 41% in standard practice (p < 0.001). The most common sites treated were the bone (42%), lung (34%), and brain (14%). More than half of VARA patients (54%) were referred to an additional health service such as home care nursing compared to 31% of standard practice patients (p = 0.01). The VARA clinic decreased the proportion of patients double-booked into an oncologists schedule from 23 to 13% (p < 0.001). CONCLUSIONS: The VARA clinic has improved wait times for palliative RT, increased patient access to supportive services, and improved the workload for lung radiation oncologists. This clinic could serve as a model for other patients with incurable cancer.

Greater inflammatory activity and blunted glucocorticoid signaling in monocytes of chronically stressed caregivers.

Chronic stress is associated with morbidity and mortality from numerous conditions, many of whose pathogenesis involves persistent inflammation. Here, we examine how chronic stress influences signaling pathways that regulate inflammation in monocytes. The sample consisted of 33 adults caring for a family member with glioblastoma and 47 controls whose lives were free of major stressors. The subjects were assessed four times over eight months. Relative to controls, caregivers' monocytes showed increased expression of genes bearing response elements for nuclear-factor kappa B, a key pro-inflammatory transcription factor. Simultaneously, caregivers showed reduced expression of genes with response elements for the glucocorticoid receptor, a transcription factor that conveys cortisol's anti-inflammatory signals to monocytes. Transcript origin analyses revealed that CD14+/CD16- cells, a population of immature monocytes, were the predominate source of inflammatory gene expression among caregivers. We considered hormonal, molecular, and functional explanations for caregivers' decreased glucocorticoid-mediated transcription. Across twelve days, the groups displayed similar diurnal cortisol profiles, suggesting that differential adrenocortical activity was not involved. Moreover, the groups' monocytes expressed similar amounts of glucocorticoid receptor protein, suggesting that differential receptor availability was not involved. In ex vivo studies, subjects' monocytes were stimulated with lipopolysaccharide, and caregivers showed greater production of the inflammatory cytokine interleukin-6 relative to controls. However, no group differences in functional glucocorticoid sensitivity were apparent; hydrocortisone was equally effective at inhibiting cytokine production in caregivers and controls. These findings may help shed light on the mechanisms through which caregiving increases vulnerability to inflammation-related diseases.

"I can't sleep!": gathering the evidence for an innovative intervention for insomnia in cancer patients.

Sleep-wake disturbances, in particular insomnia, are experienced by 30%-75% of oncology patients, yet no effective interventions have been designed to address this distressing symptom in the ambulatory setting. In response to an identified gap in care, I share the development and evaluation of an innovative sleep intervention designed specifically for the ambulatory setting. Preliminary findings, as well as an informative blueprint for conducting point-of-care research, are described. As a "bedside" nurse it is possible and within our moral imperative and social justice mandate to take action to find evidence-informed solutions to improve care for populations of patients experiencing gaps in care. The "I" used throughout the article refers to the lead author Surya.

Temozolomide rechallenge in recurrent malignant glioma by using a continuous temozolomide schedule: the "rescue" approach.

BACKGROUND: Despite advances in first-line therapy, there are few data on treatment of glioblastoma multiforme (GBM) at recurrence. Temozolomide (TMZ) is well tolerated and may have activity despite prior TMZ exposure if novel dose schedules are used. METHODS: The authors reviewed their experience with a continuous TMZ schedule (50 mg/m(2) daily), given at progression after conventional 5-day TMZ. Patients were reported in 3 groups: 1) GBM after progression on conventional TMZ; 2) GBM at first recurrence after completion of standard concomitant and adjuvant TMZ; and 3) patients with other anaplastic gliomas at second relapse on conventional TMZ. RESULTS: In Group 1, 21 patients with a median age of 54 years (range, 33 years-68 years) received a median of 3 cycles (range, 2-12 cycles) of continuous TMZ at 50 mg/m(2). Overall clinical benefit (complete response, partial response, and stable disease) was 47%, with 6-month progression-free survival (PFS) of 17%. In Group 2, 14 patients with GBM, median age 52 years (range, 38 years-62 years) received continuous TMZ at progression after initial TMZ/radiotherapy (RT) and adjuvant TMZ. The median interval after adjuvant TMZ was 3 months (range, 2 months-10 months). A median of 5 cycles of TMZ was given, and 6-month PFS was 57%. In Group 3, 14 patients with a median age of 49 years (range, 34 years-56 years) received continuous TMZ; 2 partial responses and 6 with stable disease were seen, with a 6-month PFS of 42%. Toxicities were mild and well tolerated; lymphopenia was common but no serious opportunistic infections were identified. CONCLUSIONS: Although retrospective, our results demonstrate that continuous daily administration of TMZ is an active regimen despite prior TMZ therapy. The excellent tolerability of this regimen may allow future combination with other alkylating agents or with novel therapies.

Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma.

BACKGROUND: Caring for a loved one with a malignant glioma can be a formidable responsibility. The guarded prognosis, side effects of treatments, and changes in brain function, personality and behaviour pose unique challenges in care provision by family members. It is rare that institutions provide educational programs for caregivers. PURPOSE: To evaluate the impact of providing information in an educational program to caregivers of patients diagnosed with a malignant glioma. METHODS: A structured educational program for caregivers of brain tumour patients was developed based upon multidisciplinary expert opinion and caregiver feedback. Twenty-four caregiver participants were enrolled in the program. Knowledge was assessed before, immediately following, and four to six weeks following the program. Open-ended questions were used to explore the caregivers' experiences, as well as additional benefits derived from the program. RESULTS: Knowledge scores on testing immediately after the program and four to six weeks following the program were statistically significantly improved from baseline testing, although there was a decline in scores four to six weeks after the program. These findings demonstrate effective knowledge transfer (recall of the information) immediately after the education program and four to six weeks later. Specific qualitative and quantitative data serve as a basis for understanding caregivers' needs and experiences.