key: cord-0772368-fl527629
authors: Voisin, Mathew R; Oliver, Kathy; Farrimond, Stuart; Chee, Tess
title: Brain tumours and COVID-19: the patient and caregiver experience
date: 2020-08-23
journal: Neurooncol Adv
DOI: 10.1093/noajnl/vdaa104
sha: 85a9cce18c12872aab04feec5898d1257e903a17
doc_id: 772368
cord_uid: fl527629

BACKGROUND: Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been cancelled or delayed. The long-term effects of these drastic measures on brain tumour 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 IBTA, in conjunction with the SNO COVID-19 Task Force. The survey was sent to over 120 brain tumour charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumour patients and caregivers. Responses were collected from April to May, 2020 and subdivided by patient vs 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 = 0.662) or positive cases for brain tumour patients between regions (p = 0.1068). Caregivers were significantly more anxious than patients (p = < 0.0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (p = < 0.0001). Patients from Europe experienced the most treatment delays (p = 0.0031). Healthcare providers, brain tumour charities, and not-for-profits were ranked as the most trusted sources of information. CONCLUSIONS: As a result of COVID-19, brain tumour 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.

infected. 1 As of the writing of this paper in August 2020, and according to the World Health Organization (WHO), COVID-19 has now infected over seventeen million people worldwide (confirmed cases) causing more than 650,000 deaths. 1 At the time this study was conducted, from April to May 2020, COVID-19 went from one million confirmed cases on April 2 to over six million at the end of May. 1 Most countries globally went into lockdown after the WHO declared the pandemic on March 11, 2020 and the USA became the country with the highest number of cases. 1 The COVID-19 pandemic has led to unprecedented stress on the effectiveness and ability of healthcare systems across the globe to function properly. In an effort to free up resources including existing hospital beds, thousands of elective or deemed non-urgent procedures and medical tests have been delayed or cancelled. In Canada alone, it is estimated that over 100,000 planned elective procedures (including all oncology and non-oncology) surgical procedures were cancelled or delayed in the first month of the pandemic. 2 This represents a 60% reduction in the number of planned surgical procedures compared to 2019 data. 2 A recent global expert response study was conducted to estimate the number of cancelled adult elective surgeries worldwide during the 12 weeks of peak disruption due to COVID-19. 3 The total number of estimated cancelled cases was over 28 million, with an overall cancellation rate of 72.3%. 3 One immediate response to the potential shortage of hospital beds in some countries was to rapidly build, or create from existing buildings, temporary (field) hospitals A c c e p t e d M a n u s c r i p t 7 to increase capacity for treating patients with COVID-19, in order to free up bed space elsewhere and protect patients with other diseases from the virus. 4 In-person tests and assessments have also either been delayed or changed to telehealth appointments consisting of telephone calls or virtual appointments. Multiple governments around the world have allocated additional resources and funding to telehealth services in an attempt to decrease hospital volumes and virus infection rates. 5 The current pandemic has significantly threatened every aspect of modern-day life, from countries' economies to social and family activities. The virus has amplified inequalities and created substantial shifts in human behaviour and interpersonal relationships. 6 It has also strikingly affected the day-today management of people with other life-threatening conditions including brain tumours.

Although a number of guidelines for the approach and management of surgical patients have already been suggested and implemented, 7 oncology patients and specifically neuro-oncology patients are unique because the urgency in their care can rapidly change. While the prioritization of hospital beds and resources to fight COVID-19 is paramount, it is important to continue to provide proper care to the vulnerable brain tumour patient population. To date, the direct effect on brain tumour patients and their caregivers of the drastic healthcare and societal measures implemented during the COVID-19 pandemic is unknown. The purpose of this study is to better understand how COVID-19 and healthcare changes have impacted brain tumour patients and their caregivers on a global scale. By identifying key issues in need of support for this population, we hope to improve the overall care of these patients during the rest of this pandemic and well beyond the recovery from A c c e p t e d M a n u s c r i p t 8

An anonymous online survey in seven languages (English, French, Italian, German, Spanish, Japanese, and Polish) was developed by the International Brain Tumour Alliance (IBTA) as part of the work of the Society for Neuro-Oncology (SNO) COVID-19 Task Force.

Translation support was provided by SNO members and outside translation agencies. The survey questions were first developed by the IBTA and its 13 senior advisors. Following this phase, a wider group, known as the "survey review group", was sent the draft survey for final review. The 79-question survey included both categorical and qualitative, open-ended questions. Questions were divided into the following themes: demographics; medical history including brain tumour history; general information and thoughts on COVID-19 and the effect of COVID-19 on treatment delays; telehealth assessments; clinical trials; levels of support from brain tumour charities; and caregiver experiences. Table 1 lists a summary of all 79 questions included in the survey.

The survey was widely disseminated across the globe to over 120 brain tumour charities and not-for-profits. It was also sent to brain tumour healthcare professionals to send to their pediatric and adult patients and caregivers. The survey collected responses over a 39-day period from April 22 to May 30, 2020, inclusive. Descriptive statistics were performed for all categorical questions. Chi-square tests with pairwise analyses were done with the use of Fisher's exact test if values were less than 5 to compare patients vs caregivers and between regions. All p-values < 0.05 were considered significant. Questions with less than 10 responses in all categories were not included in statistical analyses. Open-ended, qualitative questions were explored using modified thematic analysis where overarching themes are A c c e p t e d M a n u s c r i p t 9 extracted from the written answers. 8 

In total, 1989 unique surveys were completed from 33 countries, including 48 out of 50 states in the USA. These surveys included 1459 patient responses from 1284 adult patients (18 years of age or older) and 175 pediatric patients (less than 18 years old with the parent's or legal guardian's assistance) and 530 caregivers. Table 2 Table 3 . Patient results are summarized and presented in Table 4 . Caregiver demographics and results are presented in Table 5 .

A c c e p t e d M a n u s c r i p t 10

In total, females accounted for 55.4% of responses. From a total of over 30 different brain tumour types reported by patients completing the survey, the three most common diagnoses of patients surveyed were glioblastoma/GBM (22.8%), meningioma (16%), and astrocytoma (9.2%). The majority of tumour diagnoses of all types reported occurred between one to five years ago. The most common medical co-morbidity in patients was depression (24.1%) followed by high blood pressure (21.8%). A total of 54.6% of patients were described as fully independent. Of those patients with a caregiver, 63% of caregivers were the patient's partner or spouse. Overall, 34.9% of patients were actively undergoing treatment for their brain tumour at the time of the survey, with chemotherapy accounting for the most common active treatment (33.2%).

In total, 48% of patients believed they were at an increased risk of contracting COVID-19 compared to the general population, independent of both their brain tumour diagnosis and whether or not they were actively undergoing treatment. Significantly more patients in the Americas and Europe compared to Africa, Asia, and Oceania believed they had been experiencing COVID-19 symptoms (p = 0.0081 and 0.0024, respectively). In total, 4.7% of all patients had been tested for COVID-19 at the time of the survey. There were no significant differences in testing rates for brain tumour patients across regions (p = 0.662). A total of six patients out of 1459 had been diagnosed with COVID-19, and although all six of these patients were from the Americas, there was no significant difference of positive cases A c c e p t e d M a n u s c r i p t 11 between regions (p = 0.1068). Patients in the Americas were self-isolating at higher rates compared to patients from Europe (p = 0.0027), and patients from both the Americas and Europe were self-isolating at higher rates compared to patients in Africa, Asia, and Oceania (p = < 0.0001, 0.0013, respectively). Overall, 74.1% of patients felt they were coping well or fairly well with the challenges of COVID-19. When answering the qualitative questions, both patients and caregivers mentioned following COVID-19 precautions including using PPE, adhering to guidelines, and social distancing was the best way to cope with COVID-19-related anxiety. The majority of patients relied on family and friends to help them cope with the anxiety of their brain tumour, as well as doing hobbies, mindfulness practices, and exercise. The majority of caregivers relied on self-care A c c e p t e d M a n u s c r i p t 12 and mindfulness practices including meditation, positive thinking, and yoga to help them cope.

Patients in the Americas were the most informed regarding how COVID-19 might impact ongoing treatment for their brain tumour, and patients from Africa, Asia, and Oceania were the least informed (overall p = < 0.0001, all pairwise p-values = < 0.05). Europe had significantly more delays and modifications in brain tumour patients' treatment than both the Americas and Africa, Asia, and Oceania (p = 0.0014, 0.0145, respectively). Specifically, compared to the Americas, respondents from Europe indicated more treatment delays (p = 0.079). This included both chemotherapy treatment delays (p = 0.0062) and radiation therapy treatment delays (p = 0.0465). Overall, 68% of patients actively undergoing treatment were unwilling to skip their next treatment. In patients being given the choice to delay treatment, fear of contracting COVID-19 accounts for 52.5% of all influencing factors. Only 26.3% of patients had discussed the impact of treatment delays with their physicians.

In response to the qualitative question of transportation to medical appointments, the majority of patients responded that they drive or are driven by family and avoid using public 

Since COVID-19, remote and telehealth assessments have occurred more in the Americas compared to Europe and Africa, Asia, and Oceania (p = 0.0201, < 0.0001, respectively).

Patients in the Americas were less willing and more uncertain about attending in-person medical appointments because of concerns about COVID-19 compared to Europe and Africa, Asia, and Oceania (p = 0.0118, 0.0281, respectively). In total, 60.9% of patients were either unwilling or willing but very anxious to go to the hospital in the six weeks following their completion of the survey for a routinely scheduled test or appointment. At the point in time when patients completed the survey, those in the Americas were more satisfied with the care they were receiving from healthcare professionals compared to Europe and Africa, Asia, and Oceania (p = 0.0001, 0.0006, respectively).

In the open-ended question on remote and telehealth appointments, patients reported concern about delayed imaging and clinical appointments as well as overall poorer communication during telehealth assessments.

"Doesn't feel like the doctor understood my problems well through [the] telephone call." "For the first visit in two years, my clinician had to deliver disappointing news of growthvirtually."

There were no regional differences between patients in regards to their situation with clinical trials at the time of the COVID-19 survey. In total, 18. 

Overall, 85% of patients reported that they were satisfied or very satisfied with the support they were receiving from their brain tumour charity or not-for-profit organization during the COVID-19 pandemic.

Patients responded to the qualitative questions about brain tumour charities and not-forprofits noting that many in-person events and meetings scheduled by these organizations had to be cancelled because of the pandemic, with some mentioning virtual alternatives replacing these events and others saying no alternative meetings were arranged.

In terms of what these organizations can do to support patients and families during this time, most survey respondents noted that there was nothing more they felt could be done, whereas other responses included suggesting more online support groups or discussions, and more information on topics including COVID-19, brain tumours, and general updates.

The survey revealed that only 23% of patients and caregivers have ever attended an online or in-person brain tumour support group.

Open text answers to the qualitative question on brain tumour charities and not-for-profits included the following examples:

"They have stepped up their personal, direct communication with the brain tumor community and came up with creative ways for events to still take place."

A c c e p t e d M a n u s c r i p t 15 "They provide useful information on what is available for brain tumour patients in our country. They even offer masks and anti-bacterial wipes."

The most common, biggest fear for patients was a delay in their brain tumour related appointments or treatment.

"[I'm worried] that my brain tumor is back and I cannot get the necessary testing done for fear of exposure."

Most patients did not want to see any more information at this time. The majority who did respond wanting more information wanted more information specifically on how COVID-19 might affect their brain tumour, including associated risk, and treatment implications. Others When asked about what, if any, positive outcomes might there be from the COVID-19 pandemic, the most frequent response by patients was an improved relationship with family and friends.

"We have slowed down and have spent time together as a family in a season that would typically be so busy."

Caregivers also commonly responded that improved family relationships due to self-isolation together was a positive outcome.

A c c e p t e d M a n u s c r i p t 16 When asked if there was anything they would like to add, patients expressed gratitude for the survey or healthcare workers in general, and also expressed how anxious or helpless they feel during the pandemic. Caregivers responded by stating the importance of addressing the patient's needs and quality of life or their feelings of distress as described in this quote: "As a caregiver you want to keep maintaining the patient's quality of life. Restricting access to family and [the] ability to go out to eat or hike on popular trails or shop in favorite grocery stores or be confined to home on a cold/rainy daythese are things that reduce quality of life."

Of those caregivers who answered the survey, a total of 90.7% were less than 68 years old and 71.3% were female. The majority of caregivers who responded were the patient's spouse or partner (47.8%). A total of 21.7% of caregivers have attended any general brain tumour support group, with 55.7% of caregivers attending these support groups with the patients.

Overall, 40.4% of caregivers were very concerned about being diagnosed with COVID-19.

Caregivers were significantly more anxious than patients concerning brain tumour management and fear of contracting COVID-19 (p = < 0.0001).

In total, 42.8% of caregivers felt that their caring burden has significantly increased since the COVID-19 pandemic. The most cited reasons included additional home responsibilities and COVID-19 precautions including the need for personal protective equipment (PPE), cleaning practices, and social distancing / isolation. In the qualitative responses, access to care was the most cited (23.7%) additional burden or concern that brain tumour caregivers were facing since COVID-19. The burden of worry was highest over concerns that the patient might contract COVID-19 (69% of respondents) and second highest over fears about taking their A c c e p t e d M a n u s c r i p t 17 loved one to the hospital for treatment and/or monitoring during the pandemic (46.2% of respondents).

Open text (qualitative) responses from the survey highlighted caregivers' anxiety:

"I have no [outside] support from anyone as we are all isolating at home. Also, I am extremely concerned that I will become sick with COVID and there will be no way to protect my [loved one] who has the brain tumor." "I'm not allowed to go to any appointments or treatments [with my loved one who has the brain tumour]. We have to be separated during the darkest days of our lives."

To our knowledge, this is the only international study to date to specifically identify how COVID-19 is affecting brain tumour patients and their caregivers. There was a total of approximately 1500 patient and 500 caregiver responses from 33 countries representing over 30 distinct brain tumour diagnoses. The most prevalent adult and pediatric diagnosesincluding glioblastoma, meningioma, and astrocytoma for adults and medulloblastoma, ependymoma, and astrocytoma for children -are representative of the most common adult and pediatric brain tumour diagnoses. 9 The most common pre-existing medical co-morbidity in patients was depression, with 24.1% of all brain tumour patients citing this in the medical history section. A recent systematic review and meta-analysis examining the association of depression in brain tumour patients found overall prevalence of depression or depressive symptoms was 21.7%, closely resembling the responses from this survey. 10 When answering qualitative questions about how they were managing the stress of a pandemic, the majority of patients said they relied on family and friends to help them cope A c c e p t e d M a n u s c r i p t 18 with the anxiety. Other common coping mechanisms included hobbies, mindfulness practices, and exercise. The majority of caregivers who responded to the qualitative questions on stress relied on self-care and mindfulness practices including meditation, positive thinking, and yoga.

Almost 50% of caregivers felt that their job was now at risk due to the pandemic and that their caring burden since the pandemic began had also increased. According to our survey, more patients and their families from the Americas have lost their jobs because of the pandemic compared to the rest of the world. According to Statistics Canada, in April 2020 alone almost two million jobs were lost, with the unemployment rate in March 2020 rapidly rising from 7.8% to 13%. 14 Similarly in the US, the unemployment rate reached 14.7% in April 2020 with the loss of over 20 million jobs. 14 This is the highest rate of unemployment since the Great Depression which occurred from 1929 to the late 1930s. 15 It was interesting that only approximately 25% of all patients and caregivers prior to the pandemic said that they have ever attended an online or in-person brain tumour charity or not-for-profit support group meeting, especially because this survey was disseminated primarily through these agencies. We would have thought that many more respondents were actively involved in the support group activities that their local or national brain tumour charity or not-for-profit offered. The survey did not ascertain the reason for this low level of in-person or virtual support group attendance. This finding may warrant further investigation. Despite this finding, 85% of patients felt satisfied or very satisfied with the support they were receiving from their brain tumour charity or not-for-profit. Previous research documented a total of 375 adult patients and caregivers attended a brain tumour support group over a 7 year period, with only half of participants attending more than one session for unknown reasons. 16 In our survey it appears that low satisfaction with the organization was not a reason for low attendance. When responding to the open-ended A c c e p t e d M a n u s c r i p t 19 questions, patients wanted more specific information on how COVID-19 may specifically affect them and their brain tumour. On a very practical level, a number of survey respondents felt that brain tumour charities and not-for-profits could also provide COVID-19 prevention supplies to them and their families, such as masks and hand sanitizers, as part of their support services at this time.

While almost 50% of patients believed they are at an increased risk of contracting COVID-19 compared to the general population, less than 10% of all patients felt they had been experiencing COVID-19 symptoms. Less than 5% of all patients had been tested for COVID-19 at the time of the survey, and there were only six patients who tested positive, all from the Americas. Patients from the Americas and Europe were more likely to believe they had been experiencing COVID-19 symptoms, and were also more likely to be self-isolating than those in Africa, Asia, and Oceania.

Overall, brain tumour patients responded that their biggest fear was delayed appointments and treatment due to the pandemic. Between the three regions, patients in Africa, Asia, and Less than 50% of patients have had remote or telehealth services implemented during COVID-19, with patients in the Americas significantly more likely to have received these services compared to the rest of the world. This may in part be driven by patient preferences.

The survey found that those in the Americas are less willing and more uncertain about attending in-person medical appointments due to concerns about catching COVID-19 compared to other regions. This increased reluctance may have led more healthcare providers in these countries to adopt remote or telehealth services such as phone calls or videoconferencing. The survey also found that patients in the Americas were the most satisfied with the care they were currently receiving from healthcare providers, and this may in part be due to increased telehealth services being utilized in these countries. A recent singleinstitution study from the US on telemedicine during COVID-19 for neurosurgical patients found that the experience has been overall positive for both patients and physicians, with telemedicine particularly efficient for routine checkups and hardest in cases where a thorough neurological and physical examination was needed. 18 In our survey, the biggest issues with telehealth assessments were concerns about other forms of healthcare that cannot be done remotely, such as blood work and imaging, as well as some 

As with all surveys, there may be response bias. The survey consisted of self-selected volunteers and it was not required for survey respondents to complete all questions before submitting the survey. Participants could skip questions and were able to move onto the next question without being blocked from doing this so there is some missing data in the survey results. Additionally, the later questions on average had fewer responses than the earlier questions, possibly due to survey fatigue. Finally, there may have been selection bias because this survey was widely distributed through brain tumour charities and not-for-profits, and the patients and caregivers who completed the survey may not be representative of the entire population. Not all members of the patient and caregiver community have a connection with a brain tumour charity or not-for-profit, and there may be challenges connecting with patients and caregivers from underserved populations, ethnic minorities, and low-income households.

Overall, COVID-19 has led to unprecedented changes in healthcare delivery and these changes will likely persist and evolve as the pandemic continues. This study highlights the importance of conveying these issues from an institutional as well as a patient-centred approach. Future studies need to address knowledge gaps between healthcare providers and their patients / caregivers, and elaborate on refining approaches and protocols for new services including telehealth and virtual appointments. Brain tumour charities and not-forprofits should provide supportive services and objective fact-based information which is reflective of the challenges of the COVID-19 era.

A c c e p t e d M a n u s c r i p t 25

In conclusion, and to our knowledge, this is the only international survey completed to date with the purpose of identifying brain tumour patient and caregiver concerns due to the COVID-19 pandemic. Our survey highlights important key issues.

First, the pandemic has been an extremely stressful time for the brain tumour patient and caregiver population. In addition to dealing with general societal issues such as job security and COVID-19 guidelines, brain tumour patients and caregivers have also had to deal with uncertainty about their medical care and the adoption of telehealth services. A brain tumour diagnosis brings with it a great deal of uncertainty in any event. But the arrival of COVID-19 has substantially amplified this. While the pandemic has been stressful for both patients and caregivers, caregivers were significantly more anxious than patients. So, providing support and reassurance not only to brain tumour patients but also to caregivers is crucial during this doubly difficult time. Second, regional differences in the approach to and care of brain tumour patients during COVID-19, and the far-reaching societal effects of COVID-19, were evident in the survey.

Patients in the Americas were more likely to have lost their jobs, believed they have experienced COVID-19 symptoms, practiced self-isolation, and received telehealth services.

Patients from Europe reported more treatment delays. Those from Africa, Asia, and Oceania were most fearful about contracting COVID-19.

Third, patients worldwide wanted more specific information from their healthcare providers and brain tumour charities and not-for-profits about the interplay between COVID-19 and their brain tumour diagnosis. Moving forward, there needs to be an increased emphasis on M a n u s c r i p t 26 research and communication concerning issues such as prognostication and risk stratification for brain tumour patients with regard to COVID-19. The brain tumour community should strive to provide meaningful COVID-19 information and support to patients and caregivers as further research adds to our knowledge of this virus and its effects.

Finally, patients and caregivers ranked healthcare providers and brain tumour charities and not-for-profits as their most trusted sources of information during the challenging times of a coronavirus pandemic. This implies a duty for healthcare professionals and brain tumour charities and not-for-profits to ensure that they continue to fulfill patients' expectations and retain patients' confidence and trust by providing accessible, high-quality care, information and support in the age of COVID-19.

M a n u s c r i p t 30 M a n u s c r i p t 33 If you wanted to enrol in a clinical trial, have you now lost the opportunity to do this because of COVID-19? If you were considering enrolling in a clinical trial, has COVID-19 affected your decision to enrol (for example, if you are worried about increasing frequency of visits to the hospital)? If you're enrolled in a clinical trial, has it changed in any way? For example, have you had to pause your participation in the trial or had trial tests conducted locally rather than where you would normally go? If you are participating in a clinical trial outside of your own country, how has COVID-19 affected your participation? Support for patients and caregivers from brain tumour charities and not-for-profits during COVID-19 If you are supported by a brain tumour charity or brain tumour not-for-profit in your country, have you noticed any change in their levels of service/information/support during the time of the COVID-19 pandemic? How satisfied are you with the support you are receiving at this time of COVID-19 from your local, regional or national brain tumour charity or not-for-profit? What can your local, regional or national brain tumour charity/not-for-profit do to support you and your family more through this COVID-19 pandemic? Final question: is there anything else you would like to add which is not covered by the questions asked above? Caregiver specific questions How old are you? How would you describe your gender? How do you know the brain tumour patient? On a scale of 0 to 100 (where 0 is not feeling anxious at all and 100 is the most anxious), how anxious are you generally feeling about your brain tumour? What are you doing to cope with these feelings? On a scale of 0 to 100 (where 0 is not feeling anxious at all and 100 is the most anxious), how anxious are you about contracting COVID-19? What are you doing to cope with these feelings? As a caregiver, do you attend an in-person brain tumour support group? If you do attend an in-person brain tumour support group, do you attend with or without the patient? As a caregiver, do you attend online support groups? Are you concerned about being diagnosed with COVID-19? On a scale of 0 to 100 (where 0 is not at all and 100 is extreme) how re-traumatized are you about your loved one's brain tumour as a result of the COVID-19 pandemic? Has your caring burden increased since the COVID-19 virus started? What additional burdens and concerns are you facing as a brain tumour caregiver since the COVID-19 virus started? Please select all that apply. If you are working in paid employment, do you think your job is now at risk due to the virus pandemic? What, if any, positive outcomes might there be resulting from alterations in your life caused by the COVID-19 pandemic? Final question: is there anything else you would like to add which is not covered by the questions asked above? M a n u s c r i p t 34 M a n u s c r i p t 44 

World Health Organization. WHO Coronavirus (COVID-19) Dashboard

Estimating Planned Surgical Cancellations Due to COVID-19 Using Historical Data

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CBTRUS statistical report: primary brain and other central nervous system tumors diagnosed in the United States in 2012-2016

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M a n u s c r i p t 31 How would you describe your gender? Medical and brain tumour history What type of brain tumour do you have? When was your brain tumour diagnosed? Do you have any other medical conditions ("co-morbidities")? Have you usually, up until now, attended an in-person or virtual (online) brain tumour support group? (2 questions) Do you have a regular caregiver / not fully independent but don't need a regular caregiver / fully independent? If you have a caregiver, who is that? On a scale of 0 to 100 (where 0 is not feeling anxious at all and 100 is the most anxious), how anxious are you generally feeling about your brain tumour? What are you doing to cope with these feelings? Are you currently undergoing active treatment for your brain tumour? If you are currently undergoing active treatment for your brain tumour, what type of treatment?

What do you think your risk of contracting COVID-19 (coronavirus) is? Do you think that you have been experiencing any COVID-19 (coronavirus) symptoms? Have you been tested for COVID- 19? Have you been diagnosed with COVID-19? Are you self-isolating? (with a description of what this means) On a scale of 0 to 100 (where 0 is not feeling anxious at all and 100 is the most anxious), how anxious are you about contracting COVID-19? What are you doing to cope with these feelings? How do you think you are coping with the challenges of COVID-19? What is your biggest fear at this time? How many hours a day do you spend watching TV news, listening to the radio, reading newspaper reports or going on the Internet for COVID-19 updates? If you are living in a country with mandatory shut-down and/or self-isolation rules, which of these activities are you able to keep doing? At this time of the COVID-19 pandemic, please rank from 1 to 6 the way you stay "connected" to the outside world with 1 indicating your favourite communication tool and 6 indicating your least favourite communication tool. Has COVID-19 affected your medical insurance coverage for treatments or consultations, especially if you are being redirected to a different doctor or clinic that may not be in your local area? Has the COVID-19 crisis prompted you to have a discussion with your healthcare providers about the management of a life-threatening COVID-19 infection, should it occur? If you were working prior to the COVID-19 outbreak, do you think your job is now at risk due to the A c c e p t e d M a n u s c r i p t 32 virus pandemic? Have any members of your immediate family lost their jobs due to the COVID-19 pandemic? What positive outcomes might there be resulting from alterations in your life caused by the COVID-19 pandemic? Effect of COVID-19 on brain tumour information and treatment delays How well informed do you feel about how COVID-19 might impact ongoing treatment for your brain tumour? Who or what is your main source of medical information regarding having a brain tumour during COVID-19? Please rank the following list from 1 to 7 with 1 being your most trusted source and 7 being your least trusted source. What kind of additional information, if any, would you like to see more of at this time? Has COVID-19 influenced your or your family's desire to seek a second opinion at this time? Has treatment for your brain tumour been delayed or modified in any way by COVID-19? Which aspects of your brain tumour treatment have been delayed or modified by COVID-19? Select all that apply. If you are being given the choice to delay any of your treatments, what is influencing your decision? If you are receiving treatment right now, have you discussed with your treating doctors what the impact of a delay in treatment may mean for you? If you are currently receiving treatment for your brain tumour, has your treatment been relocated to a different hospital or clinic from where you normally receive it? Have you personally experienced any shortages of medication specifically for your brain tumour because of COVID-19? If you answered "yes" to the above question, how are you and your healthcare team dealing with this? As a result of COVID-19, are there any other changes to your brain tumour treatment that you would like to tell us about? Remote / telehealth assessments due to COVID- 19 Has your healthcare provider arranged for remote/virtual/telephone services during COVID-19 to reduce the number of your in-person appointments at your treating centre or clinic? If you answered "yes" to the previous question, is this remote/virtual/telephone care being done in a helpful, efficient and reassuring manner? Because of concerns about COVID-19 how willing are you, as a patient, to attend in-person medical appointments at your treating hospital or clinic right now? If you are attending clinic/hospital appointments right now, have your transportation options been affected because of COVID-19? If you have answered "yes" to the previous question, how has your attendance at and transportation to your clinic/hospital appointment been affected? Please choose all options which apply. If you are receiving treatment for your brain tumour right now, how willing are you to skip your next treatments? If you need to have a scan or other tests for your brain tumour done within the next six weeks, how willing are you to go to your treating hospital or clinic to have an MRI or other test? If you were travelling to another country for your treatment prior to COVID-19, what alternative arrangements have been put in place for you during current travel bans? Please select any options which apply. How satisfied are you with the care you are getting from your healthcare professionals and their hospitals and clinics at this time? Effect of COVID-19 on clinical trials M a n u s c r i p t