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LAY SUMMARYUsers of child sexual abuse material were interviewed about changes in their daily lives as well as sexual thoughts and behaviors during the COVID-19 restrictions. The changes found, such as in general mental health and sexual urges, can increase the risk for sexual offending and are therefore important to consider regarding possible future lockdowns. In this article, we describe a qualitative study in which we examined perceived effects of the COVID-19 pandemic on help-seeking individuals who access child sexual abuse material (CSAM, legally referred to as child pornography). The study recruited 18 participants who were part of the internet based Prevent It Cognitive Behavior Therapy (CBT) clinical trial, which aims to reduce CSAM use and child exploitation, and were willing to answer questions during a semi-structured interview about the perceived impact of the pandemic restrictions on their lives, including their sexual thoughts and behaviors. Key themes that were identified from the participants' answers included changes in day-to-day life, mental health, sexual thoughts, behaviors or urges, responses and coping strategies used to deal with sexual urges, changes on the forums, positive changes, and how they could best be assisted with coping in this situation. Our qualitative analysis also suggested that the pandemic affected urges to use CSAM, therefore potentially increasing the risk of online sexual offending. These results support that there is a need to investigate this potential negative side effect of quarantines or lockdowns before future pandemics.
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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.
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The COVID-19 pandemic represents a complex stressor that is experienced differently across individuals and age strata. The present study explored perceptions and experiences of older adults within the domains of health, social interactions, finances and care of existing chronic medical conditions;and strategies used to cope with these stressors. We recruited 30 people (mean age 81.4 years) stratified by frailty status to complete semi-structured interviews about what changes to the above domains had occurred and what coping strategies were utilized. Using inductive and deductive coding techniques, thematic analysis revealed three overarching themes. The first was Pandemic Experience, which was perceived as stressful, especially in the domains of social isolation from friends and family and concern for others' well-being. The second domain was Resilience where participants reported highly adaptable and creative ways to connect with others and viewed the pandemic from a lens of lifetime experience, which acted as a stress buffer. The third theme was Silver Linings where participants reported unexpected renewal like reconnecting with family and friends in more meaningful ways and reconnecting with nature. We found no meaningful distinction in experience by frailty status and explore reasons for this. Policy implications including internet access and training and societal aging biases are discussed in the context of aging and coping theories.
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Background: Oncology has been experiencing an increase in oral anti-cancer medications over the last ten years or more. Due to the potential toxicity of OAMs the monitoring of such patients has largely remained within hospitals. The COVID-19 pandemic expedited changes in healthcare and since March 2020, in one Oncology Department in Ireland, there has been a shift to an ANP-led model of care which utilises virtual assessments. To further improve patient experiences’ and to increase hospital capacity this study aims to transition this patient cohort to an ANP-led integrated model of care in the community setting. Methods: A scoping review was performed to determine clinical practices for the monitoring of patients receiving OAM. This review and additional analysis of international guidelines identified recommendations for clinical practice which were collated and a best practice standard was developed. This standard enabled a benchmarking activity to be performed to measure the current level of adherence to best practice by the ANP. To determine the acceptability of ANP-led care and possible transition to an integrated care model, a qualitative study was performed using telephone interviews with patients (n=9) and focus groups via Zoom™ with health care professionals (n=24). Results: Using thematic analysis four themes were generated from the data. Reflection on the pre-COVID-19 system demonstrated universal agreement that this should not be reverted to. The ANP was perceived as being ideally placed to deliver care for this cohort of patients. It was recognised that robust communication with patients and with the multi-disciplinary team was vital for OAM care delivery. There was agreement that an integrated model of ANP-led care had significant benefits and various infrastructural requirements for this model to be effective were identified. Conclusions: Results demonstrate that the current ANP-led model has already positively impacted patients’ experience with safe care evident in the benchmarking activity. Collating the results enabled development of an integrated model for OAM care. It is anticipated that by piloting this model, patient experiences could be further improved upon. Legal entity responsible for the study: The authors. Funding: Irish Cancer Society, National Cancer Control Programme (Ireland), Health Research Board (Ireland) & Office of the Nursing and Midwifery Services Director (Ireland). Disclosure: All authors have declared no conflicts of interest.
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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.
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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.
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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.
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Background: Males have increased rates of severe illness and mortality from SARS-CoV2 compared to females. It is unknown whether this is due to differential care seeking, health status, illness presentation, comorbidities, and/ or treatment responses. Understanding factors associated with sex/genderbased differences in COVID-19 outcomes is important for optimal care and therapeutics. Methods: SARS-CoV-2 test positivity and admission rates were assessed between March and October of 2020 in the Johns Hopkins Medicine (JHM) system of five hospitals. Detailed patient-level data were extracted for hospitalized patients from the JH-CROWN, a COVID-19 registry utilizing the Hopkins Precision Medicine Analytics Platform. Descriptive statistics were used to analyze differences between males and females. Results: 57% of 213,175 tests were done in females with a similar positivity rate (8.2% F vs 8.9%M). Males were more frequently hospitalized(28%F vs 33%M). Of 2608 hospitalized, more males reported fever, whereas more females reported headache, loss of smell and vomiting(p<0.05). Females had more favorable presenting respiratory parameters with lower respiratory rates and higher SpO2:FiO2 ratios(p<0.001). There was a similar burden of comorbities (Charlson score) but differences in specific comorbidities: obesity and asthma higher among females(p<0.001), heart disease (p=0.06), complicated hypertension(p<0.01), chronic kidney disease, smoking and alcohol use higher among males(p<0.001). Admission and peak lab values showed lower IL-6, ferritin, CRP, higher absolute lymphocyte count and lower neutrophil:lymphocyte ratio in females(p=0.001 for all), but no difference in D-dimer or ESR. Test of interaction between sex and age was significant for IL-6 and ferritin(F test, p<0.05). Males and females received medications against SARS-CoV-2 with similar frequency with exception of tocilizumab which was used more frequently in males. Males had a higher incidence of severe/death outcomes across all ages (28% vs 36%, p<0.001) and in particular among the 18-49 age group (11% v 25%, p<0.001). Conclusion: Females were less frequently admitted to the hospital after a diagnosis with SARS-CoV-2 infection. Despite an excess of obesity, females had a lower severity of respiratory parameters and lower inflammatory markers on presentation and had a lower frequency of severe outcomes from SARS-CoV-2 infection. Sex and age interactions with severe disease highlight critical risk features unique to males and females.