Health-related quality of life in long COVID-19 in context of symptom type

Aim: Coronavirus disease 2019 (COVID-19) is complex multisystem disease. After 4 weeks of persistent symptoms, it is termed as Long COVID-19. Long COVID-19 causes a decrease in health-related quality of life (HRQoL). In this study, it was aimed to determine which symptoms were associated with lower HRQoL in Long COVID-19 in this study. Material(s) and Method(s): This cross-sectional study was conducted in a tertiary research hospital. Patients who have positive RT-PCR results at least 28 days and at most 180 days ago were selected for the study. Online survey was applied to 266 patients who had positive PCR test results for COVID-19. The EuroQoL 5D-3L scale was used to measure the HRQoL as a dependent variable. Socio-demographic features and symptoms were assessed by the survey as independent variables. Due to heteroscedasticity, a robust standard error regression analysis was conducted to make inferences on the effects of persistent symptoms on HRQoL. Result(s): Of the total 266 participants, 163 were females (63.3%). The mean age was 41.2 +/- 11.8 years. One hundred forty-two patients (53.3%) did not report any ongoing symptom. Female gender and lower education level as socio-demographic variables, visual problems and myalgia as persistent symptoms were identified as risk factors for reduced HRQoL in Long COVID-19 patients. Discussion(s): Long COVID-19 patients experience lower levels of HRQoL, especially those with visual problems and/or myalgia. Interventions to raise the HRQoL of Long COVID-19 patients should first target visual problems and myalgia.Copyright © 2023, Derman Medical Publishing. All rights reserved.

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.

Does The Suffering End After Cure From Covid?

Background Multisystem involvement of Covid-19 has been known since beginning of the pandemic. Multisystem after-effects or sequelae of covid-19 have been noted and the term 'long Covid' encompasses these signs and symptoms. This leads to prolonged morbidity which have not been adequately addressed by Covid guidelines.The primary aim of our study was to know the spectrum of different sequelae patients have endured after recovery from acute Covid-19 and study their impact on their quality of life. Methods It was a longitudinal observational study of a cohort of 146 patients who recovered from Covid-19 illness. Patients were enrolled within a week of their onset of Covid symptoms and were followed up monthly for a duration of 6 months with a detailed clinical and investigational pulmonary, cardiac, neurological and psychiatric assessment anda final follow-up after a year. Impact on quality of life was assessed using EQ-5D-3L questionnaire. Those lost to follow up were excluded from the analysis. Results 120/146 patients qualified for final analysis. Pulmonary sequelae (40%) were the majority among the patients, followed by psychiatric (25%), neurological (21.7%) and opportunistic infections (5.8%). 4/120 died within a year. 62/120 patients documented worsening in quality of life. Sequelae like pulmonary fibrosis, PTSD had the worst impact on the quality of life.95% severe, 54.5% moderate and 25% mild Covid patients reported deterioration in QoL score respectively. Conclusion Study indicates health related consequences from Covid-19 extend far beyond acute infection andmake significant impact on their quality of life, regardless of the severity of the disease. Copyright © 2023 Wolters Kluwer Medknow Publications. All rights reserved.

Does The Suffering End After Cure From Covid?

Background Multisystem involvement of Covid-19 has been known since beginning of the pandemic. Multisystem after-effects or sequelae of covid-19 have been noted and the term 'long Covid' encompasses these signs and symptoms. This leads to prolonged morbidity which have not been adequately addressed by Covid guidelines.The primary aim of our study was to know the spectrum of different sequelae patients have endured after recovery from acute Covid-19 and study their impact on their quality of life. Methods It was a longitudinal observational study of a cohort of 146 patients who recovered from Covid-19 illness. Patients were enrolled within a week of their onset of Covid symptoms and were followed up monthly for a duration of 6 months with a detailed clinical and investigational pulmonary, cardiac, neurological and psychiatric assessment anda final follow-up after a year. Impact on quality of life was assessed using EQ-5D-3L questionnaire. Those lost to follow up were excluded from the analysis. Results 120/146 patients qualified for final analysis. Pulmonary sequelae (40%) were the majority among the patients, followed by psychiatric (25%), neurological (21.7%) and opportunistic infections (5.8%). 4/120 died within a year. 62/120 patients documented worsening in quality of life. Sequelae like pulmonary fibrosis, PTSD had the worst impact on the quality of life.95% severe, 54.5% moderate and 25% mild Covid patients reported deterioration in QoL score respectively. Conclusion Study indicates health related consequences from Covid-19 extend far beyond acute infection andmake significant impact on their quality of life, regardless of the severity of the disease. Copyright © 2023 Wolters Kluwer Medknow Publications. All rights reserved.

Feasibility and Challenges of Virtual Time Trade-Off Interviews: The Case of the EQ-5D-3L Valuation Study in Jordan

Objectives: Valuation studies are usually implemented through face-to-face interviews. However, the COVID-19 pandemic has its own impact on conducting valuation studies around the world. The Jordanian EQ-5D-3L valuation study team conducted Time Trade-Off (TTO) tasks virtually using video conferencing. This study aims to describe and assess the feasibility and challenges of conducting TTO valuation studies virtually in Jordan. Method(s): This is a descriptive study of the implementation of the EQ-5D-3L valuation study in Jordan during the period: October 2021 to March 2022. Feasibility was tested using 4 indicators: interviewers' compliance with protocol, availability of computers, internet accessibility, accessing elderly participants. Challenges were described based on reasons for dropout and interviewers' feedback throughout the study implementation. Result(s): Data were collected from 301 participants covering the 12 governorates of Jordan. The sample was representative to the Jordanian national population in term of region, age, and gender. Interviewers were compliant with the protocol with only one flagged interview out of 301 conducted interviews. 39% of the approached population could not participate due to not having computers, 11% could not participate due to not having access to internet, while 12% could not participate because they do not have either internet access or a computer. The quota for elderly (age above 65) participants was achieved with only 2% difference from general population percentage. The main study challenges were no response by participants after providing initial consenting and no show after scheduling the interview. Conclusion(s): Virtual Time Trade-Off interviews for valuation studies can be a useful mode of administration option in upper middle-income countries with access to internet and availability of computers. However, it is recommended to test the feasibility of using a hybrid method that includes both virtual and face to face interviews. Copyright © 2022

Longitudinal factors associated with quality of life (EQ-5D-3L) in a U.S. cohort of people with HIV (PWH) in routine care in the current treatment era

Aims: To describe longitudinal associations between health-related quality of life (HR-QoL) scores and demographic, clinical, and health behavioral characteristics in a multisite U.S. cohort of adults in HIV care. Method(s): People with HIV (PWH) completed an electronic assessment of patient-reported outcomes (PROs) as part of routine clinical care between 2016 and 2021 including measures for HR-QoL (EQ-5D-3L), substance use (ASSIST, AUDIT/AUDIT-C), smoking, and HIV stigma, among others. We used generalized linear latent and mixed models with nonparametric random effects for the intercept term to accommodate repeated measures on individuals to examine longitudinal factors associated with HR-QoL overall and stratified by birth-sex. Result(s): PWH (n = 10,559, median age at first assessment = 49, 17.8% cis-gender women, 1.4% transgender women;68.3% non-White) completed 33,866 assessments. Lower HR-QoL scores were associated with increasing age (p <= 0.0001);identifying as female (cis or transgender) compared to cisgender male (p <= 0.0001, p = 0.005, respectively);living in the Southeast or Western US relative to Northeast (both p <= 0.0001);identifying as a sexual orientation other than gay (heterosexual p = 0.03, bisexual p = 0.009, other p <= 0.0001);higher internalized HIV stigma (p <= 0.0001);current or former smoking (both p <= 0.0001);past methamphetamine use (p = 0.015) and current cocaine/crack, methamphetamine, opioid and cannabis use (p <= 0.0001 for each except cannabis, which was p = 0.007). Higher HR-QoL scores were associated with race/ethnicities other than White (Black: p = 0.002, Hispanic: p = 0.002, other: p <= 0.0001);the COVID-19 pandemic period (March 2020-December 2021) (p <= 0.0001);and increased AUDIT/AUDIT-C score (p = 0.001). In sex stratified models men (n = 8666) had higher HR-QoL scores among non-white compared to white (Black p = 0.0006, Hispanic p = 0.007, Other p <= 0.0001);and during the COVID period (p <= 0.0001). Men had lower HR-QoL scores among heterosexual and bisexual men relative to gay (p = 0.004, p = 0.005), if they were a former smoker (p <= 0.0001), and among past or current methamphetamine users relative to nonusers (p = 0.002, p <= 0.0001). Women (n = 1893) had higher HR-QoL scores if in care longer (p = 0.005), and lower HR-QoL if in the South (p <= 0.0001), if previously used cocaine/crack (p <= 0.0001), or if currently uses marijuana (p = 0.001). Conclusion(s): Our findings describe HR-QoL and its associations among a large diverse cohort of PWH, identifying potentially modifiable factors to improve HR-QoL, such as substance use, smoking, and impact of HIV-related stigma.

EXERCISE THERAPY TO COMBAT THE POSTACUTE SEQUELAE OF COVID-19: A CASE SERIES

SESSION TITLE: Post-COVID-19 Outcomes SESSION TYPE: Rapid Fire Original Inv PRESENTED ON: 10/19/2022 11:15 am - 12:15 pm PURPOSE: Short- and long-term postacute sequelae of SARS-CoV-2 infection (PASC) includes a constellation of clinical symptoms that persist following recovery from COVID-19. The precise pathophysiology of PASC is unknown but likely multifactorial, and intervention strategies to combat PASC are lacking. Our aim was to investigate whether homebased exercise training (HBExT) enhances recovery of and/or improves exercise capacity, pulmonary function, symptoms, and overall health-related quality of life (HRQoL) in people with PASC. METHODS: Pulmonary function [including lung diffusing capacity for carbon monoxide (DLCO) and maximal inspiratory pressure (MIP)] and the cardiopulmonary responses to maximal incremental treadmill exercise (CPET) were assessed before and after 8-weeks of HBExT in three adults (2 males, 48 and 40 years old;1 female, 37 years old) with PASC. Symptoms (via standard questionnaire) and HRQoL (via EQ-5D-3L questionnaire) were also assessed before and after HBExT. HBExT consisted of 3-to-4 aerobic (duration 25-40 min, intensity 60-80% heart rate reserve) and 2-to-3 resistance (7 exercises, 8-12 repetitions, 2-3 sets) sessions per week, and was prescribed and tracked in each participant using a mobile application (Connected mHealth) integrated with a heart rate monitor (Polar H7). RESULTS: Time from initial SARS-CoV-2 infection to enrollment in the study (in months) and adherence rate to HBExT was 8 and 66%, 4 and 71%, and 3 and 100% for the three participants. Before to after HBExT, there was a 13 ± 7% increase in exercise time (12.6 ± 2.0 vs. 14.1 ± 1.3 min) and a 14 ± 9% increase in peak O2 uptake (V̇O2peak;27.6 ± 2.8 vs. 31.5 ± 2.5 ml/kg/min) during the CPET. Neither the heart rate nor the pulmonary gas exchange (V̇E/V̇CO2, PETCO2, SpO2) response to CPET was different before vs. after HBExT. Conversely, peak-exercise breathing reserve was lower (13 ± 16 vs. 30 ± 11 L/min) and O2pulse was greater (16.3 ± 1.2 vs. 13.8 ± 0.2 ml/beat) following HBExT. No remarkable changes in pulmonary function or DLCO were noted after HBExT;however, there was a 16 ± 12% increase in MIP from before to after HBExT (74 ± 21 vs. 85 ± 18 cmH2O). After HBExT, a fraction of the participants reported resolution of persistent fatigue (n = 1), breathlessness (n = 2), chest tightness (n = 1), palpitations (n = 1), and dizziness (n = 2), and overall health score (via EQ-5D-3L) was increased (42 ± 34 vs. 81 ± 6;100 = ‘best health imaginable’). CONCLUSIONS: Prescribed exercise training may increase exercise capacity and inspiratory muscle strength, alleviate persistent symptoms of fatigue and breathlessness, and improve overall HRQoL in people with PASC. CLINICAL IMPLICATIONS: Exercise-based therapy may improve functional capacity and partially alleviate persistent symptoms in people with PASC, strengthening calls for cardiopulmonary rehabilitation as a potential therapeutic intervention in such individuals. DISCLOSURES: No relevant relationships by Natalie Bonvie-Hill No relevant relationships by Isabel Cortopassi No relevant relationships by Igor Fernandes No relevant relationships by Scott Helgeson No relevant relationships by Elizabeth Johnson No relevant relationships by Augustine Lee No relevant relationships by Amy Lockwood No relevant relationships by Patricia Mergo No relevant relationships by Bala Munipalli No relevant relationships by Tathagat Narula No relevant relationships by Brian Shapiro Competitive research grant recipient relationship with Gilead Sciences Inc. Please note: 1 year Added 03/30/2022 by Bryan Taylor, value=Grant/Research Support

Frequency, Persistence, and Patient-reported Outcomes of Neurological Symptomsin Mild COVID-19: Resultsfrom the ALBERTA HOPE COVID-19 Trial

Objective: To examine the natural history of neurological symptoms in mild COVID-19. Background: Various neurological manifestations have been reported with COVID-19, mostly in retrospective studies of hospitalized patients. There are few data on patients with mild COVID19. Design/Methods: Consenting participants in the ALBERTA HOPE COVID-19 trial( NCT04329611, hydroxychloroquine vs placebo for 5-days), managed as outpatients, were prospectively assessed 3-months and 1-year after their positive test. They completed detailed neurological symptom questionnaires, Telephone Montreal Cognitive Assessment(T-MoCA), Kessler Psychological Distress Scale(K10), and the EQ-5D-3L(quality-of-life). Informants completed the Mild Behavioural Impairment Checklist(MBI-C) and Informant Questionnaire on Cognitive Decline(IQCODE). We tracked healthcare utilization and neurological investigations using medical records. Results: Among 198 patients (median age:45, IQR:37-54, 43.9% female);28(14.1%) had preexisting neurological/psychiatric disorders. Among 179 patients with symptom assessments, 139(77.7%) reported ≥1 neurological symptom, the most common being anosmia/dysgeusia(56.3%), myalgia(42.6%), and headache(41.8%). Symptoms generally began within 1-week of illness(median:6-days, IQR:4-8). Most resolved after 3-months;40 patients(22.3%) reported persistent symptoms at 1-year, with 27(15.1%) reporting no improvement. Persistent symptoms included confusion(50%), headache(52.5%), insomnia(40%), and depression(35%). Body mass index, prior neurologic/psychiatric history, asthma, and lack of full-time employment were associated with presence and persistence of neurological symptoms;only female sex was independently associated on multivariable logistic regression(aOR:5.04, 95%CI:1.58-16.1). Patients with persistent symptoms had more hospitalizations and family physician visits, worse MBI-C scores, and were less often independent for instrumental daily activities at 1-year(77.8% vs 98.2%, p=0.005). Patients with any or persistent neurological symptoms had greater psychological distress defined as K10≥20(aOR:21.0, 95%CI:1.96-225) and worse quality-of-life ratings(mean EQ-5D VAS:67.0 vs 82.8, p=0.0002). 50.0% of patients had T-MoCA<18 at 3-months versus 42.9% at 1-year;patients reporting memory complaints were more likely to have informant-reported cognitive-behavioural decline (aOR[1-year IQCODE>3.3]:12.7, 95%CI:1.08-150). Conclusions: Neurological symptoms were commonly reported in survivors of mild COVID-19 and persisted in one in five patients 1-year later. These symptoms were associated with worse patient-reported outcomes.

POSA247 Impact of Transferring the Dispensing of Hospital-Only Medicines to Community Pharmacies during COVID-19 Pandemic: A Single-Arm, Before-and-After Study

Objectives: Ensuring the continuing of care is an imperative need, therefore throughout COVID-19 outbreak, the Portuguese Government released directives to guarantee hospital-only medicines' dispensing through the community pharmacy, reducing contacts between patients and Hospitals. This study aims to measure the value generated by the intervention of the community pharmacy in the dispensing of hospital medicines. Methods: A single-arm, before-and-after study with 3-month follow-up, was carried out in Portugal, enrolling a randomly selected sample of patients with at least one dispensation of a hospital-only medicine through the community pharmacy. Data was collected through a structured questionnaire applied by telephone interview from May 15th to October 10th, 2020. Main outcomes were access to medicines, therapeutic adherence (MAT-7), health-related quality-of-life (EQ-5D-3L), satisfaction with the service, travel and waiting time, and related costs to patients. Results: A total of 603 patients/caregivers accepted to participate in the study. The mean age was 55 years old (SD=16) and 50.6% were male. On average, the estimated time gained with the community pharmacy service was 115.1 minutes/visit compared to hospital. Annual savings derived from travel expenses (€237.6) and absenteeism (€67.4) reduction account for 271.6€/patient. There was an increase in the mean score of adherence to therapy (p<0.05) and no statistically significant changes in the mean EQ-5D-3L score. Overall, 91% of respondents would choose to continue to have access to their medication at the community pharmacy, in post-pandemic scenario. Participants reported an increase of satisfaction levels in all evaluated domains – pharmacist’s availability, opening hours, waiting time, privacy conditions and overall experience. Conclusions: Changing the dispense setting to the community pharmacies seems to promote better access, health outcomes and satisfaction for patients. Moreover, it ensures the persistence of treatments, promotes savings for patients and society, and reduces the burden of health care services, representing a crucial public health measure.

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.

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.

P.0876 Perceived stress during COVID-19 confinement in elderly participants with mild cognitive impairment or mild dementia: a cross-sectional study

Introduction: Covid-19 disease forced the Spanish government to declare a national state of alarm implementing restrictive measures such as lockdown, social distancing and stay at home measures. These measures can be related to negative consequences on mental health and stress increase in elderly people with mild cognitive impairment or mild dementia. Objectives: The aim of this study was to explore the impact of this strict confinement and to analyze factors associated with perceived stress on community-dwelling older adults with mild cognitive impairment or mild dementia during the start of the COVID-19 pandemic. Methods: This study was conducted in Málaga a Spanish region of Andalucía. In total 143 elderly participants (>55 years old) with mild cognitive impairment or mild dementia, from the SMART 4 MD (n=69) and TV-AssistDem (n=74) randomized clinical trial (RCT), were interviewed by telephone between May 11 and June 25 2020. Participants were contacted by telephone by 5 health professionals (two Neuropsychologists, a Clinical Psychologist, a Psychologist and a Psychiatric and Mental Health Clinical Nurse Specialist). Researchers had previously established relationships with participants during both RCTs. The mean time from the start of the lockdown and home-confinement measures to the interview was 70.93 days (SD=12.36, Range: 52-102). Perceived stress was assessed with the Perceived Stress Scale (PSS-14). Depression (Geriatric Depression Scale), cognition (Mini-Mental State Examination-22), quality of life (Quality of Life-Alzheimer's Disease Scale), health status (EuroQoL-5D-3L) and other variables (specific structured questionary) were also measured. To analyze the factors associated with perceived stress linear regression models were used. R version 4.0.4 program was used for statistical analysis. Results: Of the respondents, 94/143 (65.7%) were women. The mean age was 74.12 years (SD 6.49), and 36/143 (25.2%) lived alone. 66/143 (46.48%) participants were worried and 33/143 (23.24%) were afraid at the time of the evaluation. Perceived stress was negatively associated with change in living arrangement (B=-4.89;p<0.05), feeling well (B=-7.88;p<0.001), feeling calm (B=-3.12;p<0.05), quality of life (B=-1.02;p<0.001) and health status (B=-0.20);p<0.001) and positively associated with feeling sad (B=7.32;p<0.001), feeling worried (B=6.45;p<0.001), feeling afraid (B=7.77;p<0.001), feeling anxious (B=10.44;p<0.001), feeling bored (B=6.77;p<0.001), sleep disturbances (B=5.49;p<0.01) and score of depression (B=1.83;p<0.001). Discussion: Surprisingly, the score of perceived stress was similar to other studies with comparable samples1,2. The strict confinement seems not to have affected this population significantly regarding perceived stress. Less perceived stress was associated with wellbeing and better quality of life. More perceived stress was associated with less mental health and sleep disturbances. A change in living arrangements was negatively correlated with perceived stress, probably due to the increase in family support. More studies are necessary to evaluate the long-term consequences of COVID-19 restricted measures in perceived stress and mental health in this vulnerable population. No conflict of interest

Depression and Anxiety in Persons with Von Willebrand Disease

[Formula presented] Background: Depression and anxiety are associated with poor health-related quality of life (HRQoL), lower functioning and decreased treatment adherence. In 2019, 7% adults in the US had moderate/severe symptoms of depression, while <5% had anxiety. Impacts of depression and anxiety in persons with von Willebrand disease (VWD) are unclear and less studied. Objective: We assessed sociodemographic and clinical characteristics associated with depression and anxiety in a geographically diverse cohort of individuals with VWD obtaining care at seven US Hemophilia Treatment Centers (HTCs). Methods: The study enrolled and collected data on individuals age ≥12 with VWD Type 1 (VWF:Ag/RCo: ≤30%), low VWF(VWF:Ag/RCo: 30-50%), Type 2, and type 3 between September 2018-June 2021. Participants completed a survey at enrollment to collect sociodemographic and clinical characteristics, self-reported pain, joint problems and HRQoL measured by the EQ-5D-3L. A quarterly survey administered one year post-enrollment collected similar data. The patient health questionnaire (PHQ-8) and the generalized anxiety disorder (GAD-7) were administered with the last follow-up survey after August 2019. Chart reviews ed VWD type information. The association of sociodemographic and clinical characteristics with depression or anxiety was assessed using Chi-square tests for categorical variables, as well as logistic regression models with stepwise selection. Results: We analyzed data from 77 participants who completed both baseline and last follow-up surveys. Mean age was 34.2 (standard deviation (SD)=18.8) years, 74.0% were adults ≥18 years, 79.2% were female, 60.8% had Type 1/low VWF, and 3.9% had Type 3 VWD. Mean age at VWD diagnosis was 13.9 (SD=13.2) years. Overall reported depression rate was 63.4%, and 58.3% for anxiety (values ≥10 on either PHQ-8 or GAD-7). Proportion of those with depression (75% vs. 62%) or anxiety (58% vs. 58%) prior to and during the COVID-19 pandemic were not significantly different. Persons with low VWF had higher rates of depression (86.7%) or anxiety (69.2%) as compared to those with type 1 VWD (55.3% for depression, 52.8% for anxiety) or types 2 and 3 (62.5%, 60.9%, p=0.10, not significant (NS) for depression and p=0.56, NS for anxiety, respectively). Females reported a higher rate of anxiety (61.4%) than males (46.7%, p=0.30, NS). When compared to individuals who rated their general health as the same or better than 3-months ago, those who rated their health as worse had significantly higher rates of depression (92.3% vs. 57.8%, p=0.02) and anxiety (83.3% vs. 53.3%, p=0.05). Participants with chronic pain reported a significantly higher depression rate (81.6% vs. 36.8%, p=0.0003). Those who reported having joint problems also reported depression at a significantly higher rate (82.4% vs. 48.8%, p=0.002) or anxiety (74.1% vs. 46.3%, p=0.02) than those without joint problems. Logistic regression analyses demonstrated that among adults or parents of pediatric patients, being single or not with a partner was the most important variable associated with depression (odds ratio (OR)=7.0, confidence interval (CI): 1.7-29.0), followed by having joint problems (OR=6.3, CI=2.0-20.1). The most important variable associated with anxiety was being a youth aged 12-18 years old (OR=6.7, CI=1.6-26.9), followed by being single or not with a partner (OR=10.8, CI=2.5-47.5), or having worse health compared to 3-months prior (OR=12.3, CI=1.3-116.2). Mean covariates adjusted EQ index scores were lower among persons with depression (0.75±standard error (SE) 0.03 vs. 0.83±0.04, p=0.06 NS) or anxiety (0.75±0.03 vs. 0.82±0.04, p=0.7 NS) than among those without depression or anxiety. As compared to individuals without depression or anxiety, mean covariates adjusted EQ VAS was significantly lower in persons with depression (68.7±3.1 vs. 77.6±4.2, p=0.03), but not among those with anxiety (69.3±3.7 vs. 71.3±4.3, p=0.66 NS). Conclusions: Our study revealed higher rates of major depression and anxiety in thi VWD sample than the general US population. Depression had a significant negative impact on HRQoL. Mental health screening is imperative for persons with VWD, especially those with low VWF, chronic pain or joint problems. Special attention should be paid to women and youth. This study underscores the need for a multidisciplinary approach in the comprehensive care of patients seen at HTCs. Disclosures: Roberts: Genentech, Novo Nordisk, Octapharma, Pfizer, Sanofi, Takeda, uniQure: Consultancy;Takeda;Speakers Bureau: Novo Nordisk, Octapharma, Sanofi, Takeda.: Research Funding. Kulkarni: Genentech: Honoraria, Membership on an entity's Board of Directors or advisory committees;CSL Behring: Honoraria, Membership on an entity's Board of Directors or advisory committees;Shire/Takeda: Honoraria, Membership on an entity's Board of Directors or advisory committees;Novo Nordisk: Honoraria, Membership on an entity's Board of Directors or advisory committees;Bayer: Honoraria, Membership on an entity's Board of Directors or advisory committees;Sanofi Genzyme: Honoraria, Membership on an entity's Board of Directors or advisory committees;Pfizer: Honoraria, Membership on an entity's Board of Directors or advisory committees;Octapharma: Honoraria, Membership on an entity's Board of Directors or advisory committees. Sidonio: Bayer: Consultancy;Catalyst: Consultancy;Genentech: Consultancy, Research Funding;Novo Nordisk: Consultancy;Guardian Therapeutics: Consultancy;Octapharma: Consultancy, Research Funding;Biomarin: Consultancy;Pfizer: Consultancy;Takeda: Consultancy, Research Funding. Carpenter: Genentech: Honoraria;Novo Nordisk: Honoraria;Kedrion Pharmaceuticals: Honoraria;Hemophilia and Thrombosis Research Society: Membership on an entity's Board of Directors or advisory committees. Konkle: Pfizer, Sangamo, Sanofi, Sigilon, Spark, Takeda and Uniqure: Research Funding;BioMarin, Pfizer and Sigilon: Consultancy. Wu: Baxalta US Inc., Bannockburn, IL (a Takeda Company), CSL Behring L.L.C., Octapharma USA, Inc., Genentech Inc.: Research Funding. Curtis: Pfizer, Bayer, and Novo Nordisk: Consultancy;University of Southern California: Consultancy. Nichol: Pfizer, Genentech Inc., Baxalta US Inc., Bannockburn, IL (a Takeda Company), Octapharma, CSL Behring, Global Blood Therapeutics, and Novo Nordisk: Research Funding.