ABSTRACT
Background/Purpose: RBST patients have limited supportive care resources and feel secluded as few healthcare providers have expertise in these diseases. The NCI-CONNECT specialized clinic for adults with RBSTs created a multidisciplinary approach with a genetic counselor, knowledgeable healthcare team, and group sessions with a health and wellness counselor (CARES). The CARES sessions created an educational and supportive space for patients to share their unique experiences. We report the adaptation of the CARES group that evolved from in-person to virtual during COVID. Method(s): Patients with RBSTs and their families attended weekly (1 h) groups at their clinic appointments. The CARES group leaders (A.A, S.S) led wellness/coping presentations (15-20 min) and a guided discussion on the topic. In 2021, the COVID pandemic shifted the group to monthly virtual meetings, and educational content was shared via a closed-Facebook group and NCI-CONNECT website. Six groups included presenters within Neuro-Oncology, shortened prerecorded presentations (10 min) allowing for more engagement opportunities, and a coping activity concluded the meeting. Emailed survey feedback was requested (5 out of 13 completed). Result(s): On average, six patients attended each group. Topics included mindfulness, distress, relational challenges, body image, and an educational series on symptom management. All presentations can be found on the NCI-CONNECT website. Patients reported enjoyment in the ability to connect with others, with 80% preferring monthly virtual meetings. Open-ended comments noted that hearing other patients' stories created connections patients expressed they needed. Conclusions and Implications: The virtual CARES group created an accessible space for RBST patients to build relationships and gain support to manage the uncertainties of coping with a rare disease during a time of physical isolation. Patient responses capture the need to continue the group further. Future work will focus on expanding the group based on patient needs and building metrics to understand the overall group benefits in a virtual world.
ABSTRACT
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.
ABSTRACT
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.
ABSTRACT
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.
ABSTRACT
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.
ABSTRACT
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.
ABSTRACT
The World Health Organization declared COVID-19 a global pandemic on the 11th of March 2020, but the world is still reeling from its aftermath. Originating from China, cases quickly spread across the globe, prompting the implementation of stringent measures by world governments in efforts to isolate cases and limit the transmission rate of the virus. These measures have however shattered the core sustaining pillars of the modern world economies as global trade and cooperation succumbed to nationalist focus and competition for scarce supplies. Against this backdrop, this paper presents a critical review of the catalogue of negative and positive impacts of the pandemic and proffers perspectives on how it can be leveraged to steer towards a better, more resilient low-carbon economy. The paper diagnosed the danger of relying on pandemic-driven benefits to achieving sustainable development goals and emphasizes a need for a decisive, fundamental structural change to the dynamics of how we live. It argues for a rethink of the present global economic growth model, shaped by a linear economy system and sustained by profiteering and energy-gulping manufacturing processes, in favour of a more sustainable model recalibrated on circular economy (CE) framework. Building on evidence in support of CE as a vehicle for balancing the complex equation of accomplishing profit with minimal environmental harms, the paper outlines concrete sector-specific recommendations on CE-related solutions as a catalyst for the global economic growth and development in a resilient post-COVID-19 world.