Measuring symptom burden in patients with cancer during a pandemic: the MD Anderson symptom inventory for COVID-19 (MDASI-COVID).

BACKGROUND: Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of COVID-19 and support risk stratification for levels of care. At the start of the COVID-19 pandemic, our purpose was to rapidly develop, launch through an electronic patient portal, and provide initial validation for a PRO measure of COVID-19 symptom burden in patients with cancer. METHODS: We conducted a CDC/WHO web-based scan for COVID-19 symptoms and a relevance review of symptoms by an expert panel of clinicians treating cancer patients with COVID-19 to create a provisional MD Anderson Symptom Inventory for COVID-19 (MDASI-COVID). English-speaking adults with cancer who tested positive for COVID-19 participated in the psychometric testing phase. Patients completed longitudinal assessments of the MDASI-COVID and the EuroQOL 5 Dimensions 5 Levels (EQ-5D-5L) utility index and visual analog scale, which were presented through an electronic health record patient portal. To test the validity of the MDASI-COVID to distinguish between known groups of patients, we hypothesized that patients hospitalized, including having a hospitalization extended, for COVID-19 versus those not hospitalized would experience higher symptom burden. Correlation of mean symptom severity and interference scores with relevant EQ-5D-5L scores tested concurrent validity. The reliability of the MDASI-COVID was evaluated by calculating Cronbach alpha coefficients and test-retest reliability was evaluated by calculating Pearson correlation coefficients between the initial assessment and a second assessment no more than 14 days later. RESULTS: The web-based scan found 31 COVID-19-related symptoms; rankings of a 14-clinician expert panel reduced this list to 11 COVID-specific items to be added to the core MDASI. Time from literature scan start in March 2020 to instrument launch in May 2020 was 2 months. Psychometric analysis established the MDASI-COVID's reliability, known-group validity, and concurrent validity. CONCLUSIONS: We were able to rapidly develop and electronically launch a PRO measure of COVID-19 symptom burden in patients with cancer. Additional research is needed to confirm the content domain and predictive validity of the MDASI-COVID and define the symptom burden trajectory of COVID-19.

Psychological distress and symptom-related burnout in asthma during the COVID-19 pandemic.

People with asthma may be particularly vulnerable to pandemic-related psychological distress, and research is needed to understand the impact of the coronavirus disease 19 (COVID-19) pandemic on their health and well-being. We sought to study the well-being of people with asthma relative to non-asthmatic controls during the COVID-19 pandemic. We also investigated asthma symptoms and COVID-19-related anxiety as potential mediators of distress. Participants completed self-report measures of psychological functioning, including anxiety, depression, stress, and burnout. Controlling for potential confounds, multiple-regression analyses examined differences in psychological health between people with and without asthma. Mediator analyses investigated the role of asthma symptoms and COVID-19-related anxiety in this relationship. 234 adults (111 with asthma, 123 without) participated in an online survey from July to November 2020. During this time, people with asthma reported higher levels of anxiety, perceived stress, and burnout symptoms compared to controls. Elevations in burnout symptoms were found beyond general anxiety and depression (sr2 = .03, p < .001). Reported symptoms typical in both asthma and COVID-19 partially mediated this relationship (Pm = .42, p < .05). People with asthma reported unique psychological challenges during the COVID-19 pandemic including elevated burnout symptoms. Experience of asthma symptoms played a key role in vulnerability to emotional exhaustion. Clinical implications include increased attention to asthma symptom burden within the context of heightened environmental stress and restricted healthcare access.

Exploration of symptom clusters during hemodialysis and symptom network analysis of older maintenance hemodialysis patients: a cross-sectional study.

BACKGROUND: Symptom networks can provide empirical evidence for the development of personalized and precise symptom management strategies. However, few studies have established networks of symptoms experienced by older patients on maintenance hemodialysis. Our goal was to examine the type of symptom clusters of older maintenance hemodialysis patients during dialysis and construct a symptom network to understand the symptom characteristics of this population. METHODS: The modified Dialysis Symptom Index was used for a cross-sectional survey. Network analysis was used to analyze the symptom network and node characteristics, and factor analysis was used to examine symptom clusters. RESULTS: A total of 167 participants were included in this study. The participants included 111 men and 56 women with a mean age of 70.05 ± 7.40. The symptom burdens with the highest scores were dry skin, dry mouth, itching, and trouble staying asleep. Five symptom clusters were obtained from exploratory factor analysis, of which the clusters with the most severe symptom burdens were the gastrointestinal discomfort symptom cluster, sleep disorder symptom cluster, skin discomfort symptom cluster, and mood symptom cluster. Based on centrality markers, it could be seen that feeling nervous and trouble staying asleep had the highest strength, and feeling nervous and feeling irritable had the highest closeness and betweenness. CONCLUSIONS: Hemodialysis patients have a severe symptom burden and multiple symptom clusters. Dry skin, itching, and dry mouth are sentinel symptoms in the network model; feeling nervous and trouble staying asleep are core symptoms of patients; feeling nervous and feeling irritable are bridge symptoms in this symptom network model. Clinical staff can formulate precise and efficient symptom management protocols for patients by using the synergistic effects of symptoms in the symptom clusters based on sentinel symptoms, core symptoms, and bridge symptoms.

Long-Lasting Impact of the COVID-19 Pandemic on Patients with Parkinson's Disease and Their Relatives.

Background: The coronavirus disease 2019 (COVID-19) pandemic has heavily impacted medical care of patients with Parkinson's disease (PwP). Objective: To assess the longitudinal impact of the COVID-19 pandemic on PwP and their relatives in Germany. Methods: Two online, nationwide, cross-sectional surveys were conducted from December 2020 to March 2021 and from July to September 2021. Results: A total of 342 PwP and 113 relatives participated. Despite partial resumption of social and group activities, healthcare was continuously disrupted during times of loosened restrictions. Respondents' willingness to use telehealth infrastructure increased, yet the availability remained low. PwP reported worsened symptoms and further deterioration during the pandemic, resulting in an increase in new symptoms and relatives' burden. We identified patients at particular risk: young patients and those with long disease duration. Conclusions: The COVID-19 pandemic persistently disrupts the care and quality of life of PwP. Although willingness to use telemedicine services has increased, its availability needs to be improved.

Extreme Symptom Burden for Patients With COVID-19 at the End of Life; Extrapolation of Knowledge Gained to Achieve Sustained Comfort and Dignity for all Patients in Their Last Days of Life1.

BACKGROUND: We describe two complex cases in the setting of COVID-19 at the End of Life, to enhance learning for all patients. CASE PRESENTATION: Maintenance of sustained comfort in two cases required multiple drugs, specifically selected for symptoms that necessitated three separate pumps delivering continuous 24-hour subcutaneous infusion. CASE MANAGEMENT: Management of sustained comfort included opioid, midazolam, anti-secretory, diclofenac for intractable temperature, phenobarbital for extreme agitation, in one, where seizure activity was present, while insomnia, was a prominent feature of another. Management of Akatasia was also required. CASE OUTCOME: Attention to each individual patient's rapidly evolving symptoms, during the dying phase, with a thorough differential diagnosis, wa s vitally important in the context of a 'Good Death'. This was achieved in both cases, reflected by evidence at the bedside of comfort and a minimum need for 'as required' drugs in the last days of life. CONCLUSIONS: COVID-19 being a new illness, we need to prospectively study the symptom burden/clustering at End of Life and learn from management of this new disease for other illnesses also. Further research is required to develop protocols on; when does Midazolam dose reach tolerance and when should an alternative drug such as phenobarbital for sustained Gamma-Aminobutyric Acid effects be initiated; examine the optimal approach to sustained temperature control; be cognisant of extrapyramidal side effects of drugs used at End of Life and consider looking at a lack of need for 'as required' drugs in the last days of life as an outcome measure of sustained comfort.

Changes in symptom burden from 2019 to 2021 amongst community-dwelling older adults in Finland.

BACKGROUND: Symptom burden causes suffering amongst older adults and is associated with healthcare visits and prognosis. AIMS: We evaluated the prevalence of 10 symptoms and changes in symptom burden amongst home-dwelling older adults in 2019 and 2021 using Finnish cohort data. We analysed factors associated with symptom burden increase during follow-up. METHODS: Altogether 1,637 people aged 75+ participated in the Helsinki Ageing Study postal survey in 2019, where they reported the presence of 10 common symptoms over the past 2 weeks. Of them, 785 participated in a follow-up in 2021, where the same symptoms were queried. We compared the prevalence of various symptoms and symptom burden scores in the 2-year interval and evaluated factors associated with increased symptom burden during this time. RESULTS: Of participants, 33% reported at least one daily symptom in 2019 versus 44% in 2021. Symptom burden increased by a mean ratio of 1.29 between 2019 and 2021. The most common symptoms were joint pain, back pain, urinary incontinence and fatigue. The prevalence of four symptoms increased between 2019 and 2021: joint pain, urinary incontinence, dizziness and shortness of breath. Higher age, reduced functional capacity and comorbidities were associated with higher odds of symptom burden increase during follow-up. Psychological well-being (PWB) was strongly associated with lower odds of symptom burden increase in the logistic regression model. CONCLUSIONS: Symptom burden increased in our cohort aged 75+ between 2019 and 2021 before and during the COVID-19 pandemic. PWB was associated with lower odds of acquiring additional symptoms over time.

The impact of variant and vaccination on SARS-CoV-2 symptomatology; three prospective household cohorts.

OBJECTIVES: We compared age-stratified SARS-CoV-2 symptomatology of wild-type/Alpha vs Omicron BA.1/BA.2 variant infected individuals and the impact of COVID-19 booster vaccination on Omicron symptom burden. METHODS: Data from three European prospective household cohorts were used (April 2020 to April 2021 and January to March 2022). Standardized outbreak protocols included (repeated) polymerase chain reaction testing, paired serology, and daily symptom scoring for all household members. Comparative analyses were performed on 346 secondary household cases from both periods. RESULTS: Children <12 years (all unvaccinated) experienced more symptoms and higher severity scores during Omicron compared with wild-type/Alpha period (P ≤0.01). In adults, Omicron disease duration and severity were reduced (P ≤ 0.095). Omicron was associated with lower odds for loss of smell or taste (adjusted odds ratio [aOR]: 0.14; 95% CI 0.03-0.50) and higher but non-significant odds for upper respiratory symptoms, fever, and fatigue (aORs: 1.85-2.23). No differences were observed in disease severity or duration between primary vs booster series vaccinated adults (P ≥0.12). CONCLUSION: The Omicron variant causes higher symptom burden in children compared with wild-type/Alpha and lower in adults, possibly due to previous vaccination. A shift in symptoms occurred with reduction in loss of smell/taste for Omicron. No additional effect of booster vaccination on Omicron symptom burden was observed.

Post-COVID-19 Assessment of Physical, Psychological, and Socio-Economic Impact on a General Population of Patients From Odisha, India.

AIM:  This prospective cross-sectional study evaluated the physical, psychological, and socioeconomic impacts of post-COVID-19 conditions (PCC) in a generalized population from Odisha, India. MATERIALS AND METHODS:  The study protocol and clinical record form (CRF) were approved by the Institutional Ethics Committee. Those above 18 years and of all genders who had recovered in the last six months, whether hospitalized or not hospitalized after the COVID-19 diagnosis, were included in our study. RESULTS:  A total of 198 persons with a median age of 41 years (18-87 years) were enrolled at the post-Covid clinic. For COVID-19 management, 91 persons (46%) were hospitalized, and the remaining 107 (54%) were non-hospitalized. Five dominant clusters of physical symptoms were present - fatigue (82.8%), cough (54%), breathing difficulty (54%), pain in the body (53%), and sleeplessness (51%). The psychological issues faced were fear (41.6%), worry (40.4%), depression (31.8%), and anger (30.3%). The median monthly income in Indian Rupees (INR) for pre-Covid versus post-Covid was 30,000 versus 25,000, effectively a loss of 16.6% in the family income. Adverse impacts on health and economic conditions were observed in 31.3% and 20.7%, respectively. CONCLUSION: Post-Covid clinics can be a resource-appropriate health system approach for nearly 20% of the pandemic survivors with a low gross domestic product (GDP) per capita.

Risk factors for worsening of somatic symptom burden in a prospective cohort during the COVID-19 pandemic.

Introduction: Little is known about risk factors for both Long COVID and somatic symptoms that develop in individuals without a history of COVID-19 in response to the pandemic. There is reason to assume an interplay between pathophysiological mechanisms and psychosocial factors in the etiology of symptom persistence. Objective: Therefore, this study investigates specific risk factors for somatic symptom deterioration in a cohort of German adults with and without prior SARS-CoV-2 infection. Methods: German healthcare professionals underwent SARS-CoV-2 IgG antibody testing and completed self-rating questionnaires at baseline and 21 months later between April 2020 and February 2022. Differences in variables between the time points were analyzed and a regression analysis was performed to predict somatic symptom deterioration at follow-up. Results: Seven hundred fifty-one adults completed both assessments. Until follow-up, n = 58 had contracted SARS-CoV-2 confirmed by serology. Between baseline and follow-up, signs of mental and physical strain increased significantly in the sample. Symptom expectations associated with COVID-19 and a self-reported history of COVID-19, but not serologically confirmed SARS-CoV-2 infection, significantly predicted somatic symptom deterioration at follow-up. A further predictor was baseline psychological symptom burden. Conclusions: This study supports a disease-overarching biopsychosocial model for the development of burdensome somatic symptoms during the COVID-19 pandemic and supports research findings that symptom burden may be more related to the psychosocial effects of the pandemic than to infection itself. Future studies on Long COVID should include SARS-CoV-2 negative control groups and consider symptom burden prior to infection in order to avoid an overestimation of prevalence rates.

The other COVID-19 survivors: Timing, duration, and health impact of post-acute sequelae of SARS-CoV-2 infection.

AIMS AND OBJECTIVES: To determine the frequency, timing, and duration of post-acute sequelae of SARS-CoV-2 infection (PASC) and their impact on health and function. BACKGROUND: Post-acute sequelae of SARS-CoV-2 infection is an emerging major public health problem that is poorly understood and has no current treatment or cure. PASC is a new syndrome that has yet to be fully clinically characterised. DESIGN: Descriptive cross-sectional survey (n = 5163) was conducted from online COVID-19 survivor support groups who reported symptoms for more than 21 days following SARS-CoV-2 infection. METHODS: Participants reported background demographics and the date and method of their covid diagnosis, as well as all symptoms experienced since onset of covid in terms of the symptom start date, duration, and Likert scales measuring three symptom-specific health impacts: pain and discomfort, work impairment, and social impairment. Descriptive statistics and measures of central tendencies were computed for participant demographics and symptom data. RESULTS: Participants reported experiencing a mean of 21 symptoms (range 1-93); fatigue (79.0%), headache (55.3%), shortness of breath (55.3%) and difficulty concentrating (53.6%) were the most common. Symptoms often remitted and relapsed for extended periods of time (duration M = 112 days), longest lasting symptoms included the inability to exercise (M = 106.5 days), fatigue (M = 101.7 days) and difficulty concentrating, associated with memory impairment (M = 101.1 days). Participants reported extreme pressure at the base of the head, syncope, sharp or sudden chest pain, and "brain pressure" among the most distressing and impacting daily life. CONCLUSIONS: Post-acute sequelae of SARS-CoV-2 infection can be characterised by a wide range of symptoms, many of which cause moderate-to-severe distress and can hinder survivors' overall well-being. RELEVANCE TO CLINICAL PRACTICE: This study advances our understanding of the symptoms of PASC and their health impacts.

Economic Burden of COVID-19: A Systematic Review.

Objective: To review and qualitatively synthesize the evidence related to the economic burden of COVID-19, including healthcare resource utilization and costs. Methods: A systematic review of studies that assessed the economic burden [eg, direct costs, productivity, macroeconomic impact due to non-pharmaceutical interventions (NPIs) and equity] of COVID-19 was conducted by searches in EMBASE, MEDLINE, MEDLINE-IN-PROCESS, and The Cochrane Library, as well as manual searches of unpublished research for the period between January 2020 to February 2021. Single reviewer data extraction was confirmed independently by a second reviewer. Results: The screening process resulted in a total of 27 studies: 25 individual publications, and 2 systematic literature reviews, of narrower scopes, that fulfilled the inclusion criteria. The patients diagnosed with more severe COVID-19 were associated with higher costs. The main drivers for higher costs were consistent across countries and included ICU admission, in-hospital resource use such as mechanical ventilation, which lead to increase costs of $2082.65 ± 345.04 to $2990.76 ± 545.98. The most frequently reported indirect costs were due to productivity losses. On average, older COVID-19 patients incurred higher costs when compared to younger age groups. An estimation of a 20% COVID-19 infection rate based on a Monte Carlo simulation in the United States led to a total direct medical cost of $163.4 billion over the course of the pandemic. Conclusion: The COVID-19 pandemic has generated a considerable economic burden on patients and the general population. Preventative measures such as NPIs only have partial success in lowering the economic costs of the pandemic. Implementing additional preventative measures such as large-scale vaccination is vital in reducing direct and indirect medical costs, decreased productivity, and GDP losses.

Chronic Obstructive Pulmonary Disease is Associated with a More Symptomatic Burden and Severe Presentation of COVID-19: A Korean National COVID-19 Cohort Study.

Insufficient data are available on comprehensive evaluation of demographics, symptoms or signs, laboratory findings, and disease course in patients with coronavirus disease 2019 (COVID-19) and chronic obstructive pulmonary disease (COPD). We aimed to evaluate whether COPD patients are more prone to severe COVID-19 compared with those without COPD. We also investigate the clinical characteristics and disease course of COVID-19 in patients with COPD versus those without COPD. Patients were selected from a Korean nationwide cohort of 5,628 patients with confirmed COVID-19 and who had completed treatment or quarantine by April 30, 2020; 3,673 patients aged 40 years or older were included in this study. COPD was diagnosed using patient reports of physician-diagnosed COPD. During the study period, all patients with COVID-19 in Korea were hospitalized following the national health policy. Of the study participants, 38 (1.0%) had COPD. Regarding initial symptoms, COPD patients with COVID-19 showed greater sputum production (50.0% vs. 29.8%, p < 0.01) and dyspnea (36.8% vs. 14.9%, p < 0.01) than those without COPD. In addition, patients with COPD were more likely to receive oxygen therapy or non-invasive ventilation (29.0% vs. 13.7%, p = 0.01) and had a higher mortality (21.1% vs. 6.4%, p < 0.01) than those without COPD. After adjusting for age, sex, body mass index, and comorbidities, COPD patients showed increased risk of severe COVID-19 compared with those without COPD. Our nationwide study showed that COVID-19 patients with COPD have higher symptomatic burden and more severe disease course than those without COPD.

Post-COVID-19 Symptom Burden: What is Long-COVID and How Should We Manage It?

The enduring impact of COVID-19 on patients has been examined in recent studies, leading to the description of Long-COVID. We report the lasting symptom burden of COVID-19 patients from the first wave of the pandemic. All patients with COVID-19 pneumonia discharged from a large teaching hospital trust were offered follow-up. We assessed symptom burden at follow-up using a standardised data collection technique during virtual outpatient clinic appointments. Eighty-six percent of patients reported at least one residual symptom at follow-up. No patients had persistent radiographic abnormalities. The presence of symptoms at follow-up was not associated with the severity of the acute COVID-19 illness. Females were significantly more likely to report residual symptoms including anxiety (p = 0.001), fatigue (p = 0.004), and myalgia (p = 0.022). The presence of long-lasting symptoms is common in COVID-19 patients. We suggest that the phenomenon of Long-COVID may not be directly attributable to the effect of SARS-CoV-2, and believe the biopsychosocial effects of COVID-19 may play a greater role in its aetiology.

Pandemic Uncertainty.

The COVID-19 pandemic continues to affect most aspects of daily life, and looking for ways to cope and adapt in this altered state is a priority. Days of unsettling changes have turned into weeks, months, and, most likely, at least a year or more until an effective vaccine is distributed worldwide. COVID-19 has disrupted societies across the world, with a global scope that is unprecedented, ongoing, and without a demarcated end. Combined with the political turmoil related to the presidential election in the United States, environmental turmoil including widespread fires, and ongoing structural barriers (most notably systemic racism), 2020 has been, for most, a year that will live on in our minds long after the pandemic ends. .