Theme 12 - Clinical Management and Support

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

Clinician Experiences Using a Collaborative Pediatric Virtual Health Model: Telehealth Rounding and Consultation for Kids(TRaCK)

Background: Pediatric admissions in Canada have demonstrated increasing complexity, acuity and subspeciality usage. However, subspecialists are concentrated in urban tertiary centres, forcing rural pediatric patients to travel long distances. Moreover, tertiary centres are in overcapacity while regional sites underutilize pediatric beds. Therefore, our team developed an innovative Telehealth-facilitated Rounding and Consultation Model for Kids (TRaC-K). TRaC-K is currently being piloted between a tertiary pediatric hospital (Alberta Children's Hospital), and a single regional hospital (Medicine Hat Regional Hospital) in the Canadian province of Alberta. To sustain, improve and scale-up the TRaC-K model, it is essential to understand the experiences of those using the model. Hence, the purpose of this study was to understand tertiary and regional site clinician experiences with providing inpatient clinical care using the TRaC-K model. Methods: This qualitative study was conducted after 3 months of piloting the TRaC-K model. Clinicians with the experience of using TRaC-K at tertiary and regional hospitals were recruited to participate in focus groups. These focus groups were conducted virtually to elicit their perspectives, experiences, and suggestions regarding the model. NVivo 12 was used to conduct inductive thematic analysis. The Donabedian model, a conceptual model commonly used for examining health services and evaluating quality of health care based on structure, process and outcomes was used as the framework to thematically analyze the qualitative data. Preliminary findings of this study are reported here. Results: In total, 15 clinicians participated in 6 focus groups across the two sites. Participants included physicians, nurses and allied health professionals. In terms of structure, clinicians identified that various members were involved in TRaC-K. The model aided in connecting multidisciplinary care teams from both hospitals as well as families, promoting inclusive participation. The telehealth monitor was easy to maneuver with good audio and visual quality. However, technology improvements included integrating TRaC-K with other platforms such as Zoom and providing captions. Regarding process, the onset of the COVID-19 pandemic and shift towards virtual health increased the applicability and uptake of the program. The clinicians suggested operational improvements such as off- hours availability, role clarifications, and more clearly defined goals. Despite suggested improvements, the program was easy to use and had beneficial outcomes such as collaborative decision making between the sites which increased confidence in inter-hospital transfer. Clinicians expressed that the program had the potential to be expanded into other patient populations and sites. Conclusion: These findings indicate that the users of the TRaC-K model felt that it was feasible and reported positive perceptions and experiences using TRaC-K. The findings from this study would help develop similar models to provide pediatric inpatient clinical care to rural children in other parts of the world.

Intensive care admissions following rapid response team reviews in patients with COVID-19 in Australia

Objectives: To evaluate the epidemiology of rapid response team (RRT) reviews that led to intensive care unit (ICU) admissions, and to evaluate the frequency of in-hospital cardiac arrests (IHCAs) among ICU patients with confirmed coronavirus disease 2019 (COVID-19) in Australia. Design: Multicentre, retrospective cohort study. Setting: 48 public and private ICUs in Australia. Participants: All adults (aged ≥ 16 years) with confirmed COVID-19 admitted to participating ICUs between 25 January and 31 October 2020, as part of SPRINT-SARI (Short PeRiod IncideNce sTudy of Severe Acute Respiratory Infection) Australia, which were linked with ICUs contributing to the Australian and New Zealand Intensive Care Society Adult Patient Database (ANZICS APD). Main outcome measures and results: Of the 413 critically ill patients with COVID-19 who were analysed, 48.2% (199/413) were admitted from the ward and 30.5% (126/413) were admitted to the ICU following an RRT review. Patients admitted following an RRT review had higher Acute Physiology and Chronic Health Evaluation (APACHE) scores, fewer days from symptom onset to hospitalisation (median, 5.4 [interquartile range (IQR), 3.2–7.6] v 7.1 days [IQR, 4.1–9.8];P < 0.001) and longer hospitalisations (median, 18 [IQR, 11–33] v 13 days [IQR, 7–24];P < 0.001) compared with those not admitted via an RRT review. Admissions following RRT review comprised 60.3% (120/199) of all ward-based admissions. Overall, IHCA occurred in 1.9% (8/413) of ICU patients with COVID-19, and most IHCAs (6/8, 75%) occurred during ICU admission. There were no differences in IHCA rates or in ICU or hospital mortality rates based on whether a patient had a prior RRT review or not. Conclusions: This study found that RRT reviews were a common way for deteriorating ward patients with COVID-19 to be admitted to the ICU, and that IHCA was rare among ICU patients with COVID-19. © 2022, College of Intensive Care Medicine. All rights reserved.

Prenatal Stress and the Microbiome in the Time of COVID- A Prospective Cohort Study

Background: Given the emerging importance of the role of the gut microbiota-brain-axis in mediating prenatal stress-induced neurodevelopmental outcomes, a prospective cohort study was conducted. The COVID-19 Pandemic occurred halfway through study recruitment (n=35). The study aims to a) evaluate perceived stress across gestation, b) determine whether maternal microbiome composition changes with stress, and c) discern the influence of the COVID-19 pandemic on maternal stress, psychometric scores, and alterations in the microbiome. Methods: This longitudinal study design includes five time points across pregnancy and the post-partum period, at which biological samples were collected and psychometrics administered. Samples include maternal rectal and vaginal swabs. Psychometrics include measures of perceived stress, anxiety, depression, sleep, diet, and childhood adversity. Study participants identify as 62.9% White and 31.4% Black or African American. Finally, PacBio full-length 16S rRNA sequencing using SMRT Cell technology is used to identify the maternal rectal and vaginal microbial communities. Results: Participants delivering during the pandemic reporting greater perceived stress (p≤0.05). Of note, there were no significant differences in anxiety or depressive symptoms across gestation in the pre-pandemic participants as compared to participants during the pandemic. During the second trimester, increased depression associated with increased rectal alpha diversity, and increased perceived stress was associated with increased levels of Prevotella, Sneathia, and Gardnerella in the rectal samples. In contrast, participants with increased depressive symptoms during the third trimester had reduced vaginal alpha diversity measures at delivery. Conclusions: Findings suggests maternal perceived stress and depressive symptoms are associated with alterations in maternal microbiota Keywords: Gut Microbiome, Prenatal Maternal Stress, Gut-Brain Axis

Psychometric validity and reliability of the 10- and 2-item Connor-Davidson resilience scales among a national sample of Americans responding to the Covid-19 pandemic: an item response theory analysis.

PURPOSE: Psychometric validity/reliability of 10-item and 2-item abbreviations of the Connor-Davidson Resilience Scale (CD-RISC-10; CD-RISC-2) was investigated via item response theory and classic approaches. METHODS: We sampled 5023 adult American participants in a June/July 2020 survey on the COVID-19 pandemic's psychological effects. Our questionnaire incorporated the CD-RISC-10 with other validated measures. CD-RISC-10 items were ranked on item-to-scale correlations, loadings on a one-factor confirmatory factor analysis model, and item slope/threshold parameters plus information curves from a unidimensional graded response model. Concurrent validity of the highest ranked item pair was evaluated vis-à-vis the CD-RISC-10 and CD-RISC-2. Internal consistency, based on average variance extracted (AVE) and multiple reliability coefficients, was also compared. Convergent/divergent validity was tested by correlating anxiety, depression, fear of COVID-19, anxiety sensitivity, coping, and personality measures with both scales and the highest ranked item pair. Binary agreement/classification indexes assessed inter-rater reliability. RESULTS: Items 2 and 9 from CD-RISC-10 ranked the highest. Reliability coefficients were > 0.93, > 0.72, and > 0.82 for the CD-RISC-10, CD-RISC-2, vs summation of items 2 and 9. AVEs were 0.66, 0.67, and 0.77. CD-RISC abbreviations and the summation of items 2 and 9 correlated negatively with anxiety (> - 0.43), depression (> - 0.42), and fear of COVID-19 (> - 0.34); positively with emotional stability (> 0.53) and conscientiousness (> 0.40). Compared to the CD-RISC-2, summative scores of items 2 and 9 more efficiently classified/discriminated high resilience on the CD-RISC-10. CONCLUSION: We confirmed construct validity/reliability of copyrighted CD-RISC abbreviations. The CD-RISC-10's items 2 and 9 were psychometrically more salient than the CD-RISC-2.

Planting seeds of victory: creating shared meaning while gardening amidst a pandemic

The Victory2020 Garden Community Program was established by faculty members within the University of Florida (UF), Institute of Food and Agricultural Sciences (IFAS) in Marion and Columbia County Extension offices. In response to COVID-19, the purpose of the program was to provide online-mediated programs that could be completed at the desired pace of the participants, while promoting a self-reliant, science-based approach to learning about home food production through gardening. Due to food insecurity rates in both Marion (14.4%) and Columbia (15.2%) counties ranking above the statewide average in Florida, an immediate need to provide educational resources on becoming self-sufficient in growing one's own food became increasingly important due to nationwide supply-chain shortages (Feeding America, 2020). 2,548 participants representing 43 states and six countries were provided access to eight learning modules hosted by Canvas, an online tool through UF. Participants were provided a package of free seeds, including corn, squash, cucumber, and cowpea to plant their Victory2020 Garden. A purposeful online community was established by extension agents in Marion and Columbia counties to facilitate quality discussion and growth, culminating in over 225,000 total impressions. The findings of the program revealed that 88% of gardening households began eating more fruits and vegetables while 73% are embracing new food safety techniques in both the garden and kitchen. Primary investigators and co-pi's recommend an implementation of a program timeline to benefit the participants through diverse, online learning options. Continued programming addressing mental health, nutrition, and gardening is recommended across extension programs nationally.

Social networks shape beliefs and behavior: evidence from social distancing during the COVID-19 pandemic

We show that social network exposure to COVID-19 cases shapes individuals' beliefs and behaviors concerning the coronavirus. We use de-identified data from Facebook to document that individuals with friends in areas with worse COVID-19 outbreaks reduce their mobility more than otherwise similar individuals with friends in less affected areas. The effects are quantitatively large and long-lasting: a one standard deviation increase in friend-exposure to COVID-19 cases in March 2020 results in a 1.2 percentage point increase in the probability of staying home on a given day through at least the end of May 2020. As the pandemic progresses- and the characteristics of individuals with the highest friend-exposure vary- changes in friendexposure continue to drive changes in social distancing behavior, ruling out many unobserved effects as drivers of our results. We also show that individuals with higher friend-exposure to COVID-19 are more likely to publicly post in support of social distancing measures and less likely to be members of groups advocating to "reopen" the economy. These findings suggest that friends can influence individuals' beliefs about the risks of the disease and thereby induce them to engage in mitigating public health behavior.

Connected while apart: Associations between social distancing, computer-mediated communication frequency, and positive affect during the early phases of COVID-19

The COVID-19 pandemic has fundamentally altered life for individuals worldwide. Specifically, at the time of data collection (late April 2020), most forms of face-to-face interactions were limited and, in some cases, prohibited, as close contact with others increases the rate of transmitting the virus. As social beings, engaging in social distancing may have negative consequences on well-being. However, many individuals maintained their social connections by means of computer-mediated communication (CMC), such as hosting FaceTime happy hours or family reunions. Utilizing a nationally representative sample of 985 adults from the United States, this study investigated the association between social distancing adherence and positive affect and the extent to which this association might be mediated by CMC frequency. Results did not indicate a direct effect of social distancing adherence on positive affect. However, an indirect effect between these two variables occurred when mediated by CMC frequency. Specifically, greater social distancing adherence predicted greater frequency of CMC, which predicted greater positive affect. These findings held controlling for age, gender, race/ethnicity, relationship status, and income. Results suggest that despite social distancing, CMC may be a beneficial way to engage with others during and, perhaps, beyond COVID-19. [ABSTRACT FROM AUTHOR] Copyright of Journal of Social & Personal Relationships is the property of Sage Publications, Ltd. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

REDUCTION IN HRQOL WITH INCREASING VOC FREQUENCY AMONG PATIENTS WITH SCD

Objectives: Sickle cell disease (SCD) is one of the most prevalent inherited diseases, with approximately 300,000 affected children born each year worldwide. A major cause of morbidity among patients with SCD is the occurrence of severely painful episodes, known as vaso-occlusive crisis (VOCs), which can impact quality of life and cause organ damage or even death. This study assessed the impact of VOC events on health-related quality of life (HRQoL) and associated utility of patients with SCD. Methods: The LEGACY registry (CICL670AUS38) is a prospective, multicenter, observational study that documented the outcomes of 498 SCD patients living in the United States. For the cohort of 181 adult patients (≥18 years), Short Form-36 (SF-36) Health Survey scores and VOCs were evaluated every 6 months for 3 years or until patient discontinuation. SF-36 scores were mapped to the EuroQoL five-dimension (EQ-5D) questionnaire. For each patient, the annualized rate of VOC events was calculated from first visit to each visit with HRQoL measures reported, and annualized VOC rates were subsequently grouped (<1, ≥1 to <3, ≥3 VOCs/year). Mean EQ-5D scores were compared between annualized VOC groups using generalized estimating equations to account for within-patient correlation across visits. Differences between the groups on the SF-36 component scores and SF-36 domains were also assessed. Results: Patients with ≥3 VOCs/year reported, on average, a mapped EQ-5D score 0.0697 lower (p = 0.014) than patients with <1 VOCs/year (0.6213 vs. 0.6910). Furthermore, patients who had ≥3 VOCs/year also showed, on average, a SF-36 Physical Component Score 2.480 lower (p = 0.025) compared to patients with <1 VOCs/year (48.684 vs. 51.164). Conclusions: This analysis demonstrates the long-term impact of VOC frequency on HRQoL. SCD patients who had a higher number of annual VOCs were shown to have a worse HRQoL compared to patients with <1 VOCs/year.

Health behavior adherence and emotional adjustment during the COVID-19 pandemic in a US nationally representative sample: The roles of prosocial motivation and gratitude.

RATIONALE: Substantial health behavior change (e.g., social distancing, mask-wearing) is needed to slow COVID-19. Yet, adherence to these guidelines varies, and avoiding social contact may contribute to declines in emotional adjustment. OBJECTIVE AND METHODS: Drawing on prior research linking social motives to health behavior and well-being, we investigated the associations among social motives (prosocial motivation, gratitude) and resilience to social distancing (health behavior adherence, emotional adjustment) in a US nationally representative sample (N = 1007) collected in April 2020. RESULTS: Prosocial motivation, but not gratitude, correlated with health behavior adherence and social distancing practice. Conversely, gratitude, but not prosocial motivation, correlated with emotional adjustment (daily accomplishments, meaning in life, thriving, psychological distress, positive and negative affect). Analyses controlled for gratitude/prosocial motivation, self-focused motivation, COVID-19 worries, work arrangement, stay-at-home order, likelihood of COVID-19 diagnosis, and demographics. CONCLUSION: Public health campaigns focusing on the benefits of health behaviors for others, rather than just oneself, may promote adherence and emotional adjustment.

Prevalence of sars-cov-2 igg antibodies in patients with cystic fibrosis at the minnesota cystic fibrosis center in the first 6 months of known virus in the state and in follow-up (6 months and 1 year)

RATIONALE: Since the first known US case of COVID-19 (Coronavirus Disease 2019) was reported in early 2020, little was known about the prevalence in the cystic fibrosis (CF) population. CF is a genetic disorder caused by more than 1700 different mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene resulting in a wide spectrum of disease phenotypes. As the majority of individuals with CF have chronic lung disease, this population is considered to be high risk for severe disease if infected with any virus, especially that of SARS-CoV 2 (severe acute respiratory syndrome coronavirus 2). As the number of cases in the US nears 18 million and the number of deaths in the US is currently reported at greater than 318,000, the prevalence of COVID-19 in the CF population remains largely unknown although the clinical course for those infected is becoming more clear. To date, the Cystic Fibrosis Foundation reported 344 cases of COVID-19 in the US and 3 people who have died, giving a case fatality rate of 0.9%. METHODS: Early in the course of the pandemic, we began studying the exposures, and symptoms of people with CF to evaluate the prevalence of COVID-19 IgG antibody in patients who receive care at the MN CF Center. Individuals >/= 12 years of age completed a brief, online survey detailing possible exposures, symptoms of COVID-19, and behavioral data (e.g. social distancing practices). We extracted additional data through the electronic medical record (EMR) to identify risk factors for COVID-19 IgG development including age, BMI, sex, FEV1 (forced expiratory volume in 1 second), CFTR modulator use, diabetes. Participants were evaluated for COVID-19 IgG at the time of enrollment (0 months) and the natural history of COVID-19 IgG will be further elucidated with additional Ab testing at 6 months and 12 months post-enrollment. RESULTS: Early data includes 75 enrollees with an average age of 35 years. 51% of participants are female. Of those tested, 9.5% had a positive COVID IgG test. 83% of those individuals tested positive for COVID with PCR analysis. CONCLUSION: SARS-CoV-2 is becoming more prevalent in the state of MN and the prevalence of COVID-19 IgG in individuals with cystic fibrosis suggest similar exposure as the general community. Additional data collection at 6 months and 12 months will identify the natural progression of IgG immunity in in CF patients in response to COVID-19.

Fit-testing of respiratory protective equipment in the UK during the initial response to the COVID-19 pandemic.

BACKGROUND: Public Health England guidance stipulates the use of filtering facepiece (FFP3) masks for healthcare workers engaged in aerosol-generating procedures. Mask fit-testing of respiratory protective equipment is essential to protect healthcare workers from aerosolized particles. AIM: To analyse the outcome of mask fit-testing across National Health Service (NHS) hospitals in the UK during the first wave of the coronavirus disease 2019 (COVID-19) pandemic. METHODS: Using the Freedom of Information Act, 137 NHS hospitals were approached on May 26th, 2020 by an independent researcher to provide data on the outcome of fit-testing at each site. FINDINGS: Ninety-six hospitals responded to the request between May 26th, 2020 to October 29th, 2020. There was a total of 86 mask types used across 56 hospitals, 13 of which were used in at least 10% of these hospitals; the most frequently used was the FFP3M1863, used by 92.86% of hospitals. Overall fit-testing pass rates were provided by 32 hospitals with mean pass rate of 80.74%. The most successful masks, in terms of fit-test failure rates, were the Alpha Solway 3030V and the Alpha Solway S-3V (both reporting mean fit-test failures of 2%). Male- and female-specific pass and failure rates were provided by seven hospitals. Across the seven hospitals, 20.1% of men tested failed the fit-test for all masks used, whereas 19.9% of women tested failed the fit-test for all masks used. Failure rates were significantly higher in staff from Black, Asian, and Minority Ethnic (BAME) backgrounds 644/2507 (25.69%) across four hospitals. CONCLUSION: Twenty percent of healthcare workers tested during the first response to the pandemic failed fit-testing for masks. A small sample revealed that this was most prominent in staff from BAME backgrounds.

Preserving multidisciplinary care model and patient safety during re-opening of ambulatory CF clinic for non-urgent care-a hybrid telehealth model

Introduction: The University of Virginia (UVA) adult cystic fibrosis (CF) program implemented a rapid and successful transition to telemedicine care in mid-March, 2020 in response to the COVID-19 pandemic. In May 2020, the program responded to the re-opening of ambulatory operations for non-acute care by redesigning the care model yet again to create a hybrid encounter type. Hybrid encounters combine elements from both in-person and telemedicine visits. The goal remained to minimize person-to-person contacts for patients and care team members (CTMs) while ensuring patient access to quarterly, co-produced, multidisciplinary CF care. Methods: Using quality improvement methods, the UVA adult CF program created a standardized hybrid model of care for in-clinic visits to include a few in-person interactions combined with up to four virtual interactions with members of the multidisciplinary team. From the CF team, two physicians, the nurse coordinator and social worker attend clinic in person while the registered dietitian, respiratory therapist, psychologist, and quality improvement coordinator attend clinic remotely via a Cisco Webex telehealth platform. All CTM interactions occur within the patient's clinic exam room and hybrid visit types are limited to three per half-day clinic. Results: A total of 16 hybrid visits occurred between May 14, 2020 and June 11, 2020. All hybrid visits were multidisciplinary and fulfilled patient requests to see CTMs. All patients seen by hybrid encounter participated in co-produced agenda setting, underwent spirometry and obtained bloodwork;75% provided sputum for surveillance culture. Each hybrid visit type was attended by an average of four CTMs and amounted to 63 separate interactions. Of these interactions, 28 were completed virtually, reducing in-person contacts and personal protection equipment (PPE) utilization by 44% compared to a fully in-person model of care. Conclusion: Combining in-person and telehealth components in a multidisciplinary CF care model reduces patient and staff in-person interactions and PPE utilization compared to regular clinic visit type. It is feasible to adopt a hybrid model of telehealth for reliable access to biological data and multidisciplinary team members while continuing to minimize personto- person contacts for both patients and staff.