The COVID-19 Pandemic Experience for Patients with Central Nervous System (CNS) Tumors: Differences in Patient- Reported Outcomes (PROs) and Practice Recommendations

Background/Purpose: The COVID-19 pandemic and associated mitigation procedures have significantly altered daily life in ways that may disproportionately affect patients with CNS tumors. This study aimed to explore differences in symptom burden and interference, mood disturbance, and health-related quality of life in the CNS tumor patient population during the COVID-19 pandemic, compared to a normative sample of pre-pandemic data. Method(s): Data from the Neuro-Oncology Branch (NOB) Natural History Study, including demographic and clinical data, as well as PROs including PROMIS Anxiety and Depression Short-Forms, EQ- 5D-3L, MDASI-Brain Tumor/Spine Tumor, and NeuroQOL-Cognition Function, were collected and compared across groups ('NOB normative sample' and 'COVID year' patients) using one-sample proportion tests. Result(s): 178 COVID year CNS tumor patients (55% male, 82% Caucasian, median age 45 years) were compared with 678 NOB normative sample patients with similar demographic and clinical characteristics. Symptom burden remained comparably high during the COVID year compared to the NOB normative sample with the most common moderate-severe symptoms being fatigue (31% vs. 35%), difficulty remembering (28% vs. 24%), drowsiness (22% vs. 25%), disturbed sleep (20% vs. 22%), and distress (20% for both). However, a significantly greater proportion of COVID year assessments endorsed moderate-severe depression on the PROMIS compared to the NOB normative sample (17% vs. 12%, p = 0.023, Cohen's h = 0.22) and moderate-severe depression/anxiety on the EQ-5D-3L was also more prevalent (53% vs. 43%, p = 0.009, Cohen's h = 0.28). There were no other significant differences in PROs between groups. Conclusions and Implications: These findings demonstrated that while objective symptom burden for CNS tumor patients was unchanged, there was an increase in depression reported during the COVID-19 pandemic. Future work should investigate potential pandemic-era interventions for screening, targeting, and improving both mood disturbance and other disease-specific symptoms to improve symptom burden and quality of life.

Nonsuicidal Self-injury and Barriers to Accessibility of Dialectical Behavior Therapy Among Black Youth.

Youth in communities of color are disproportionately affected by the current mental health crisis, as highlighted in the recent Declaration of National Emergency by the American Academy of Child and Adolescent Psychiatry (AACAP), the American Academy of Pediatrics (AAP), and the Children's Hospital Association (CHA).1 The structural racism that Black youth encounter is a social determinant of health that contributes to inequitable access to evidence-based mental health services. Black youth in the United States experience inequities in financial hardships, access to educational resources, and the undue burden of the coronavirus disease 2019 (COVID-19) pandemic, further exacerbating an already outsized mental health burden.2.

Theme 12 - Clinical Management and Support

Power wheelchair prescription, utilization, satisfaction, and cost for patients with amyotrophic lateral sclerosis: preliminary data for evidence-based guidelines. Stage at which riluzole treatment prolongs survival in patients with amyotrophic lateral sclerosis: a retrospective analysis of data from a dose-ranging study. Support needs and interventions for family caregivers of patients with amyotrophic lateral sclerosis (ALS): a narrative review with report of telemedicine experiences at the time of COVID-19 pandemic. [Extracted from the article]

Effects of the COVID-19 pandemic on prehospital emergency care for stroke and transient ischaemic attack: A protocol for a systematic review and meta-analysis

Background The COVID-19 pandemic impacted on health service provision worldwide, including care for acute time sensitive conditions. Stroke and transient ischaemic attacks (TIA) are particularly vulnerable to pressures on healthcare delivery as they require immediate diagnosis and treatment. The global impact of the COVID-19 pandemic on prehospital emergency care for stroke/TIA is still largely unknown. Thus, the aim of this study is to conduct a systematic review and meta-analysis to investigate the impact of the COVID-19 pandemic on prehospital emergency care for stroke and TIA. Methods Following the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guidelines, the review is registered on PROSPERO (registration number CRD42022315260). Peer-reviewed quantitative studies comparing prehospital emergency care for adults with stroke/TIA before and during the COVID-19 pandemic will be considered for inclusion. The outcomes of interest are ambulance response times and emergency call volumes for stroke/TIA. A systematic search of databases including PubMed, Embase and Scopus will be conducted. Two authors will independently screen studies for inclusion based on predetermined inclusion and exclusion criteria. Data extraction and quality assessment will be conducted by two authors. Meta-analysis will be performed to calculate overall pooled estimates of ambulance response times (primary outcome) and stroke/TIA call volumes (secondary outcome), where appropriate. Where heterogeneity is low a fixed-effects model will be used and where heterogeneity is high a random-effects model will be used. Subgroup and sensitivity analyses will include location, stroke/TIA diagnosis and COVID-19 case numbers. Results Data on primary and secondary outcomes will be provided. Results of subgroup/sensitivity analyses and quality assessment will also be presented. Conclusions This review will identify existing literature reporting the impact of the COVID-19 pandemic on prehospital emergency care for adult patients with stroke/TIA and provide summary estimates of effects on ambulance response times.

EFFECTS OF THE COVID-19 PANDEMIC ON PRE - HOSPITAL CARE FOR STROKE AND TRANSIENT ISCHAEMIC ATTACK : A PROTOCOL FOR A SYSTEMATIC REVIEW AND META-ANALYSIS

Background and aims: The COVID-19 pandemic impacted on health service provision worldwide, including care for acute time sensitive conditions. Stroke and transient ischaemic attacks (TIA) are particularly vulnerable to pressures on health system care delivery. The aim of this study is to conduct a systematic review and meta-analysis to investigate the impact of the COVID-19 pandemic on pre - hospital care for stroke or TIA. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) guidelines, the review will be registered on PROSPERO. Peer-reviewed quantitative studies in English, which report the impact of the COVID-19 pandemic on pre - hospital care for adult stroke/TIA patients will be considered for inclusion. A systematic search of databases including Pubmed, Embase and Scopus from January 2020 to present day will be conducted. Studies will be screened for inclusion and, data extraction and quality assessment will be conducted by the authors. Meta-analysis will be performed to calculate overall pooled estimates of ambulance response times (primary outcome) and stroke/TIA call volumes (secondary outcome), where appropriate. Heterogeneity will be addressed as per the Cochrane Handbook criteria. Results: Data on primary and secondary outcomes will be provided. Conclusions: This study will summarise existing literature investigating the impact of the COVID-19 pandemic on pre - hospital care for those with stroke/TIA.

A qualitative study of older adults' experiences of embedding physical activitywithin their home care services

Background: Physical activity programmes have been shown to improve older adults' functional capacity, independence and quality of life. Research around structured exercise programmes has been completed in different groups of community-dwelling older people, however few studies have focused on the older population receiving formal home care. In a feasibility study, we embedded physical activity within older adults existing home care services through the 'Care to Move' (CTM) programme. The aim of this qualitative study is to explore older adults' experiences of the CTM programme. Methods: We conducted semi-structured telephone interviews with 13 older adults and one carer. Topics covered included participants overall experiences of the CTM programme, changes to their overall activity and participation, aspects of the programme that they liked or found valuable and issues that they found challenging. Interview transcripts were coded and analysed thematically to capture barriers and facilitators to programme delivery. Results: Four themes emerged: i) 'I'm feeling good about it', ii) 'safety and security is the name of the game', iii) 'we're a team as it stands', iv) 'it's [COVID] depressing for everybody at the moment'. Older adults identified benefits of CTM participation including improvements in physical and psychological wellbeing. However, frailty and multimorbidity influenced overall engagement. Participants expressed concerns around the logistics of programme delivery and competing healthcare assistant (HCA) interests. The broader role of HCA's in supporting the CTM programme was highlighted as well as the emotional support that HCAs provided to older adults. HCA continuity was identified as a barrier to ongoing programme engagement. The impact of COVID on older adults physical and mental health negatively impacted programme delivery. Conclusion: Our findings suggest that embedding the CTM programme within home support services is feasible. Restructuring of services, addressing HCA continuity, and adopting individual approaches to programme delivery may enhance the implementation of services.

Financial toxicity and distress during the COVID-19 pandemic in people living with primary brain tumors

Primary brain tumor (PBT) patients experience high symptom burden and functional limitations, which may be impacted by the economic strain and mood disturbance during the COVID-19 pandemic. We assessed financial toxicity and associated patient reported outcomes (PROs) after one year of lockdown in a cohort of PBT patients. Patient and disease characteristics and PROs including FACIT-COST, MDASI-Brain Tumor, PROMISAnxiety/ Depression short forms, and EQ-5D-3L were collected from 7/2020 to 5/2021 from participants in our Natural History Study. Descriptive statistics, Pearson correlations, and independent samples t-tests evaluated PRO relationships. The cohort included 112 PBT patients: 57% male, 87% white, mean age = 47 (range 25 - 80). Majority were married (65%), completed ≥ 4-year college degree (73%), earned annual family income ≥ $50,000 (68%) and living with a high-grade glioma (72%) complicated by recurrence (51%). Using FACIT-COST, 56% reported some financial hardship due to illness with a mean FACIT-COST of 28.3 (SD = 11.3, range: 0 - 44). Half of patients reported feeling moderately to extremely anxious or depressed. Non-Whites and Hispanics as well as those not currently working reported worse financial toxicity compared to White non- Hispanics and individuals currently working (21.4 vs 29.8 and 25.7 vs 30.4, respectively). Worse financial toxicity scores strongly correlated with worse overall symptom burden (r = -0.55) and interference (r = -0.42), worse anxiety (r = -0.39) and depression scores (r = -0.44), and worse overall HRQOL scores (r = -0.33)[all p< .01]. This is the first report of FACIT-COST in PBT patients to our knowledge and demonstrates that non-White individuals living with high grade glioma who are not currently working due to their tumor reported worse financial toxicity which was strongly correlated with higher symptom burden and interference with lower HRQOL. Future studies to assess financial toxicity longitudinally and post-pandemic using the FACIT-COST are needed.

An innovative virtual multi-institutional, multidisciplinary neuro-oncology tumor board: The Nih-Nob experience during the COVID-19 pandemic

BACKGROUND: The American Academy of Neurology Institute and Society for Neuro-Oncology recommend multidisciplinary tumor board (MTB) meetings as a quality metric in neuro-oncology. With the COVID-19 pandemic resulting in travel restrictions, we expanded our existing MTB by transitioning to a virtual format that maintained our commitment to providing consultation for primary CNS tumor cases. This transition permitted participation by neuro-oncology teams from over 30 Brain Tumor Trials Collaborative (BTTC)/National Cancer Institute-Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) centers across the United States. Here, we describe results from opening our MTB remotely to these teams. METHODS: We retrospectively reviewed records from remote MTB meetings held between April 2020 and March 2021. To gauge the impact of our MTB on clinical management, we administered a brief survey querying BTTC members. RESULTS: Twenty-eight providers presented 41 cases during 24 virtual MTB meetings (range: 1-4 cases per meeting). Two cases (5%) were presented only for educational value. Approximately half (54%) of the cases discussed dealt with diagnosis/management of an NCI-CONNECT rare CNS tumor. During MTB discussions of the 39 cases seeking diagnosis/management recommendations, 32% received clinical trial recommendations, 10% were suggested to enroll in the NCI Neuro-Oncology Branch (NOB) Natural History Study (NCT02851706), 17% received a recommendation to obtain central neuropathology review, and 100% received recommendations for further disease management. Most BTTC survey respondents (83%) found these recommendations impactful in the management/treatment of their presented case or generally useful/ informative for their clinical practice. CONCLUSION: We describe the feasibility and utility of an innovative virtual multi-institutional MTB. These novel remote meetings allowed for discussion of complex neuro-oncology cases and recommendations from experts, particularly important for those with rare CNS tumors. Our study's findings during the COVID-19 pandemic of the value of providing remote access to MTBs should apply postpandemic.

Mood disturbance in patients with central nervous system (CNS) tumors during the COVID-19 pandemic

BACKGROUND: Primary CNS tumors are associated with uncertainty likely contributing to mood disturbance that is common throughout the disease trajectory. The intersection of the COVID-19 pandemic with a CNS tumor diagnosis may further impact the anxiety/depression experienced in this population. This study assessed key anxiety/depression symptoms in patients with CNS tumors prior to and during the COVID year. METHODS: Patient reported outcomes (PROs), including the PROMIS Anxiety and Depression Short Forms and EQ-5D-3L, were collected at the time of clinical or telehealth evaluation from the COVID year (March 2020-February 2021) and were compared to assessments through February 2020 (a NOB-normative sample), reflecting what we would typically see in our regular clinic evaluations. RESULTS: The COVID sample (N = 178) was primarily White (82%), male (55%), median age of 45 (range 18-79), and KPS 3 90 (50%). The majority had high grade (70%) brain (83%) tumors with 3 1 prior recurrence (60%) and 25% were on active treatment. Visits were primarily conducted via telehealth (64%) and 20% had progression at assessment. Compared to the NOB-normative sample, patients reported significantly higher depression scores (moderate-severe, 17% vs. 12%, p < 0.05), but not anxiety (18% vs. 16%). Eleven percent reported both moderate-severe anxiety and depressive symptoms (8% pre-COVID). Overall health assessed by the EQ-5D-3L was similar to the normative sample in all dimensions, apart from impact of moderate/extreme mood disturbance, which was more prevalent in the COVID year (53% vs. 43%, p < 0.05%). CONCLUSION: Patients with CNS tumors are at risk for significant symptoms of depression and anxiety;this risk was heightened during the COVID year. Further evaluation of clinical factors associated with risk are underway. These findings highlight the need for assessments and interventions that can be administered via telehealth to address the mental health needs of this vulnerable population.

Patient-reported symptom burden and interference: A comparison between COVID-19 pandemic year and normative data in patients with central nervous system (CNS) tumors

CNS tumor patients are highly symptomatic causing interference with activity and worse quality of life. Social distancing due to the COVID-19 pandemic increased demands on the patient, caregivers, clinicians, and the health care system. The NCI's Neuro-Oncology Branch Natural History Study (NHS) systematically collected patient-reported outcomes (PROs) provide insight into how these challenges influenced symptom burden and interference during the COVID year. METHODS: Patient and disease characteristic as well as patient-reported symptoms and interference (MDASI-BT/-SP) and general health status (EQ-5D-3L) from 3/2020-2/2021) were compared to NHS normative sample collected prior to 3/2020. RESULTS: The sample (n = 178) was primarily White (82%), male (55%), median age of 45 (range 18 - 79) and KPS 3 90 (51%). The majority had high-grade (70%) brain (83%) tumors (BT) with ≥ 1 prior recurrence (60%) and 25% were on active treatment. Clinical visits were primarily conducted via telehealth (64%) and 20% of all patients were diagnosed with progression at the time of assessment. Most commonly reported moderate-severe symptoms among BT patients were fatigue (30%), difficulty remembering (28%), feeling drowsy (22%). Among spinal cord tumor patients, fatigue (39%), pain (35%) and numbness/tingling in arms/legs/trunk (35%) were most frequently reported. These symptoms were reported in similar frequencies by the normative sample. Nearly half of the COVID year sample (48%) reported moderatesevere activity-related interference. Reported problems with mobility (38%), self-care (19%), pain/discomfort (40%), and usual activities (50%) were similar in both groups except for increased mood disturbance (53%) was reported during the COVID year. CONCLUSION: These findings support CNS tumor patients remained highly symptomatic with significant impact on health-related quality of life during the COVID year. Clinicians should develop timely individual care plans to help BT patients navigate their disease course. Evaluation of risk associated with more severe symptoms and functional limitations are ongoing.