Development of a national cystic fibrosis patient and caregiver experience of care survey

Background: Since 2015, the Cystic Fibrosis Foundation (CFF) has collected and reported experience-of-care (XoC) data. Data collection was discontinued with the onset of the COVID-19 pandemic in 2020. In 2021, CFF convened a steering committee of a person with cystic fibrosis (CF), caregivers, and clinicians to develop a XoC survey to help understand and improve the XoC at CFF accredited programs. Method(s): Using prior CFF patient and family XoC surveys (2015-2020 pediatric and adult versions) [1,2] and a telehealth survey created in 2020 [3], draft pediatric and adult versions of the survey were developed. The steering committee and CFF leaders conducted three rounds of reviewand revision. After the surveys were professionally translated into Spanish, and the CFF Spanish Speakers Committee reviewed them, the surveys were programmed into Qualtrics for data collection. The data collection process was piloted with selected programs before a national launch. Result(s): Pediatric and adult surveys were developed in English and Spanish. The surveys cover in-person and telehealth (phone/video) visits and visits that are a mix of in-person and telehealth. The topics include interactions with care team members, relationship-centered care, care planning, shared decision-making, overall quality of care, race and ethnicity, gender identity, infection, prevention and control, quality of the virtual connection, and experience with remote monitoring. People with CF (PwCF) and their families are invited to complete a survey once every 6 months by text or email. PwCF and family contact data (email and mobile phone number) are stored in CFF's CFSmartReports Patient and Family Tool. After a clinic visit, contact data are electronically transferred to the Qualtrics platform to trigger a survey invitation. Responses are anonymous and reported back to programs via an electronic dashboard in near-real time. The data collection process was tested with three pediatric and three adult care programs for 3 weeks before the national launch on October 25, 2021. More than 2,000 PwCF and their families have completed a survey. Conclusion(s): The new XoC surveys offer PwCF and their families an opportunity to share feedback about their in-person and virtual care experiences. Efforts are underway to create a national report for dissemination and to engage programs with the data reported in their dashboards to celebrate what PwCF and their families appreciate about their care and to work together with them to improve gaps.Copyright © 2022, European Cystic Fibrosis Society. All rights reserved

Outcomes after Using Vedolizumab in Paediatric Inflammatory Bowel Disease in a Tertiary Centre, over a 3 Year Period

Background Vedolizumab has proven efficiency in adults but data in paediatric inflammatory bowel disease (pIBD) is limited. We present the outcome of treatment with vedolizumab in refractory pIBD cohort. Study Design Retrospective and ongoing prospective review of all patients commenced on Vedolizumab following loss of response to anti-tumour necrosis factor [TNF] between Nov 2017 and Nov 2020. Aims and Objectives The primary outcome was remission at Week 14 and last follow up (wPCDAI/PUCAI<10) from commencing vedolizumab. The secondary outcomes were to review trend of biochemical makers, surgical interventions, and adverse effects. Results 11 children received vedolizumab (6[54%] males), mean age at time of diagnosis 12.45(8.34-15.48) with a median(IQR) time from diagnosis of 2.68(1.79-5.28)years;6 [54%] Crohn's disease [CD] and 5[46%] Ulcerative colitis/IBD Unclassified [UC/IBDU] (table 1). For CD;5/6 was treated previously with anti-TNF [40% primary failure, 60% secondary failure], all had colonic disease, 3/6 upper GI involvement and 3/6 perianal disease. One child with Bruton's agammaglobulinemia was anti-TNF naive when commenced on vedolizumab. All UC children were treated with anti-TNF [40% primary failure, 60% secondary failure], 80% had pan-colitis. Median age at time of commencing vedolizumab (V0) was 14.99(13.0-17.6). Baseline characteristics at V0;faecal calprotectin( FC) 2851(92-6000), Hb 114(96-146), ESR 22(4-90), albumin 39(27-46) and CRP 16.7(4-39.5). 4/11(36%) required surgery, three of whom had colectomy. 8/11 remained on immunomodulators with vedolizumab. Transient raised transaminases and eczema was reported once and low mood with suboptimal response noted once. 6/11(54%) were in remission 14 weeks from commencing vedolizumab (V14) and 4/11(36%) were excluded. At last follow up from commencing vedolizumab (VF), median years 2.21(0.78-3.43), 3 remained in remission. In CD cohort, one child had a defunctioning ileostomy and remained in steroid free remission (SFR) at V14 and VF (3.43 years) on vedolizumab monotherapy. One had colectomy (FC-3296 wPCDAI-60), steroid dependency compounded by methotrexate induced interstitial nephritis and vedolizumab was discontinued at VF (2.19 years). Two continue to have active disease at V14 after commencing vedolizumab. One had SFR at V14 and was transitioned at 2 years (FC-2585, wPCDAI-25) on vedolizumab. One with anti-TNF resistant disease, achieved clinical remission 9 months after starting vedolizumab (wPCDAI 2.5, FC 598) before being transitioned. In UC cohort, two had vedolizumab primary non-response needing subtotal colectomy. One patient with PUCAI 5 at V14 needed regime intensification for low vedolizumab levels but had active disease (PUCAI-25, FC-366) when transitioned at VF (2.06 years). One patient, who achieved remission whilst on steroid at V14, remains in SFR at VF (0.58 years) on concomitant immunomodulation and optimal vedolizumab level at end of induction (>19). One who was lost to follow-up during COVID, was transitioned on 4 weekly vedolizumab regime. Conclusion At V14, 54% of patients achieved clinical remission and we see significant improvement with PUCAI/PCDAI scores and faecal calprotectin in both UC and CD cohort. We are continuing this study over a longer period to achieve a larger cohort.

Micro-eliminating hepatitis C in a network of 47 English Prisons through an industry, prison healthcare and patient organisation partnership

Background and aims: National Health Service England (NHSE) plans to eliminate Hepatitis C (HCV) in England by 2025, five years earlier than World Health Organisation goals. With a reported HCV prevalence of ∼6% in male prisons, and ∼12% in female prisons, secure environments are an essential component of this elimination plan. In 2020, NHSE defined HCV micro-elimination as ³95% of prison residents tested within the previous 12 months, ³90% of RNA positive patients treated or initiated on treatment and presence of a robust system to review ongoing testing and treatment performance to ensure these targets are maintained. Method: To support NHSE in their HCV Elimination Program, a partnership between Gilead Sciences, Practice Plus Group (PPG) and the Hepatitis C Trust (HCT)was formed in 2019. PPG is the provider of healthcare to 47 English prisons with approximately 30, 000 residents. PPG Regional BBV Lead Nurses, and Gilead Medical Scientists worked with prison and HCV stakeholders to optimise test and treat pathways for new prison admissions. Whole prison HCV Intensive Test and Treat events (HITTs) were also run in targeted prisons to ensure testing of residents who were incarcerated before these optimisations were implemented. Results: Following pathway optimisation across the PPG network of 47 prisons, the HCV screening within 7 days of prison entry increased from 41% in May 2019 to 84% in October 2021. This increase was achieved despite there being significant restrictions to reduce the transmission of COVID-19 being in place across all English prisons. HITTs have been performed in 15 PPG prisons to-date. 1, 909 new RNA+ diagnoses were made during this time with 1, 848 patients started on direct-acting antiviral treatments. By November 2021, 16 out of the 47 prisons have been given micro-elimination status by NHSE with 4 more having submitted data demonstrating achievement of this target and awaiting decision. A further 4 more prisons are on track to achieve micro-elimination by April 2022. Conclusion: This partnership has demonstrated that, even during a global pandemic, it is possible to achieve the micro-elimination of HCV in a defined setting. Maintenance of micro-elimination status is essential if we are to achieve the WHO HCV targets, requiring robust pathways that are regularly adapted to the changing environment, and systems for tracking performance, both of which have been put in place by this partnership.

The effect of COVID-19 on the management of acute ureteric colic in a tertiary hospital

Introduction: The COVID-19 pandemic has changed many care pathways. We have analysed the treatment of patients with ureteric colic during the pandemic compared to an equivalent period before it began. Methods: Patients with acute ureteric colic were identified from acute CTKUBs requested in the emergency department from 1 September to 31 December 2020 ('pandemic cohort') and compared to the same timeframe in 2019 ('pre-pandemic cohort'), supplemented by clinical notes review. Results: There were 92 patients in the pandemic cohort, and 107 in the pre-pandemic cohort. Full results are detailed in Table 4. The rates of conservative management (64% vs 76%), temporising stent insertion (11% vs 14%) and emergency nephrostomy insertion (1% vs 1%) was similar in both cohorts (p > 0.05). However, more primary treatment was provided during the pandemic (25% vs 10%) mainly as extracorporeal shockwave therapy (ESWL, 21% vs 7%;p < 0.05). The pandemic cohort also had a shorter time to intervention (17 vs 39 days), driven by more rapid ESWL (4 vs 12 days) and to confirmation of stone passage (44 vs 91 days) (p < 0.05 for all three parameters), whereas the time to salvage ureteroscopy for failed conservative management was equivalent (35 vs 45 days, p > 0.05). Fifteen percent of the pandemic and 30% of the prepandemic cohort were lost to follow-up (p < 0.05). Conclusion: During COVID, reduced elective activity, particularly ESWL for renal stones, created capacity for urgent intervention such that the proportion of patients who had acute ESWL tripled (21% vs 7%) and were treated in one-third of the time (4 vs 12 days). Accordingly, the time to confirmation of stone passage was more than halved during the pandemic (44 vs 91 days). In accordance with recommendations from NICE, TISU, and GIRFT, these data confirm the importance of ringfencing urgent ESWL slots as we emerge from the pandemic.

Cardiac complications of COVID-19: Incidence and outcomes.

BACKGROUND: Coronavirus disease-2019 (COVID-19) has been associated with pre-existing cardiac conditions as well as cardiovascular complications. The incidence rates of cardiac complications, age, and gender differences in this population are unknown. OBJECTIVES: We wanted to study the incidence of cardiac complications and mortality in patients with COVID-19. METHODS: Data from the TriNetX COVID-19 global research network platform was used to identify COVID-19 patients. We compared patients with and without cardiac complications in patients with COVID-19 and obtained survival data. RESULTS: The final cohort was composed of 81,844 patients with COVID-19. Cardiac complications occurred in 9.3% of patients as follows: acute coronary syndromes in 1.3%, heart failure in 4.4%, atrial fibrillation in 4.5%, sinus bradycardia 1.9%, ventricular tachycardia in 0.5% and complete heart block in 0.01%. Mortality was significantly higher in patients with the cardiac complications mentioned (20%) than in those without them (2.9%) (odds ratio 7.2, 95% CI, 6.7-7.7; p < 0.0001). Older males seem to have higher incidence of cardiac complications and mortality. CONCLUSIONS: Patients with COVID-19 who have cardiac complications have a higher risk of mortality when compared to those without cardiac complications.

A Tale of Two Institutions: COVID-19 Positive Rates in Asymptomatic Patients Pre-Screened for Spine Procedures and Surgeries in Los Angeles, California.

STUDY DESIGN: Retrospective cohort study. OBJECTIVES: The coronavirus disease (COVID-19), caused by the severe respiratory syndrome coronavirus 2 (SARS-CoV-2), has created an unprecedented global public health emergency. The aim of the current study was to report on COVID-19 rates in an asymptomatic population prior to undergoing spine procedures or surgeries at two large Los Angeles healthcare systems. METHODS: Elective spine procedures and surgeries from May 1, 2020 to January 31, 2021 were included. Results from SARS-CoV-2 virus RT-PCR nasopharyngeal testing within 72 hours prior to elective spine procedures were recorded. Los Angeles County COVID-19 rates were calculated using data sets from Los Angeles County Department of Public Health. Chi-squared test and Stata/IC were used for statistical analysis. RESULTS: A total of 4,062 spine procedures and surgeries were scheduled during this time period. Of these, 4,043 procedures and surgeries were performed, with a total of 19 patients testing positive. Nine positive patients were from UCLA, and 10 from USC. The overall rate of positive tests was low at .47% and reflected similarities with Los Angeles County COVID-19 rates over time. CONCLUSIONS: The current study shows that pre-procedure COVID-19 testing rates remains very low, and follows similar patterns of community rates. While pre-procedure testing increases the safety of elective procedures, universal COVID-19 pre-screening adds an additional barrier to receiving care for patients and increases cost of delivering care. A combination of pre-screening, pre-procedure self-quarantine, and consideration of overall community COVID-19 positivity rates should be further studied.

Predictors of clinical decompensation in patients presenting with COVID-19 in an urban hospital health system

Introduction: Severe acute respiratory syndrome coronavirus 2 (SARSCoV- 2) has resulted in a pandemic which has infected more than 128 million people and led to over 2.8 million deaths worldwide. Although the introduction of efficacious vaccines has led to overall declines in the incidence of SARS-CoV-2 infection, there has been a recent increase in infections once more due to the appearance of mutant strains with higher virulence. It therefore remains vital to identify predictors of poor outcomes in this patient population. Purpose: The objective of our study was to identify predictors of prolonged hospitalization, intensive care unit (ICU) admission, intubation, and death in patients infected with SARS-CoV-2. Methods: We conducted a retrospective analysis of all patients hospitalized with SARS-CoV-2 at our health system that includes one tertiary care center and two community hospitals located in the Chicago metropolitan area. The main outcome was a composite endpoint of hospitalization >28 days, ICU admission, intubation, and death. Explanatory variables associated with the primary outcome in the bivariate analysis (p<0.05) were included in the multivariable logistic regression model. Statistical analysis was performed using IBM SPSS 25.0. Results: Between March 1, 2020 and May 31, 2020, 1029 patients hospitalized with SARS-CoV-2 were included in our analysis. Of these patients, 379 met the composite endpoint. Baseline demographics are described in Table 1. Of note, our cohort consisted of a predominantly minority patient population including 47% Hispanic, 17% African American, 16% Caucasian, and 16% other. In bivariate analysis, age, hypertension, tobacco and alcohol abuse, obesity, coronary artery disease, arrhythmias, valvular heart disease, dyslipidemia, hypertension, stroke, diabetes, documented thrombosis, troponin, CRP, ESR, ferritin, LDH, BNP, D-dimer >5x the upper limit of normal, lactate, and right ventricular outflow tract velocity time integral <9.5 were significant. After multivariable adjustment, explanatory variables associated with the composite endpoint included troponin (OR 2.36;95% CI 1.08-5.17, p 0.03), D-dimer (OR 1.5;95% CI 1.23-1.98, p<0.01, lactate (OR 1.58;95% CI 1.28-1.95, p<0.01), and documented thrombosis (OR 3.56;95% CI 1.30-8.70, p<.05). Race was not a predictor of poor outcomes in the bivariate or multivariate analysis (Table 2). Conclusions: In a large urban cohort with a predominantly minority population, we identified several clinical predictors of poor outcomes. Of note, race was not a predictor of the primary endpoint in this study. While recent literature has demonstrated worse outcomes among racial minorities infected with SARS-CoV-2, our data suggests these variations are related to social determinants of health rather than biologic causes. (Figure Presented).

Discriminatory accuracy of the SOFA score for determining clinical decompensation in patients presenting with COVID-19

Introduction: While the global dissemination of vaccines targeting the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has resulted in a decline in the incidence of infections, the case fatality rates have remained relative stable. A major objective of managing hospitalized patients with documented or suspected COVID-19 infection is the rapid identification of features associated with severe illness using readily available laboratory tests and clinical tools. The sequential organ failure assessment (SOFA) score is a validated tool to facilitate the identification of patients at risk of dying from sepsis. Purpose: The aim of this study was to assess the discriminatory accuracy of the SOFA score in predicting clinical decompensation in patients hospitalized with COVID-19 infection. Methods:We conducted a retrospective analysis at a three-hospital health system, comprised of one tertiary and two community hospitals, located in the Chicago metropolitan area. All patients had positive SARS-CoV-2 testing and were hospitalized for COVID-19 infection. The primary outcome was clinical decompensation, defined as the composite endpoint of death, ICU admission, or need for intubation. We utilized the most abnormal laboratory values observed during the admission to calculate the SOFA score. Receiver Operating Curves (ROC) were then constructed to determine the sensitivity and specificity of SOFA scores. Results: Between March 1st and May 31st 2020, 1029 patients were included in our analysis with 367 patients meeting the study endpoint. The median SOFA score was 2.0 IQR (Q1, Q3 1,4) for the entire cohort. Patients who had in-hospital mortality had a median SOFA score of 4.0 (Q1,Q3 3,7). In patients that met the primary composite endpoint, the median SOFA score was 3.0, IQR (Q1, Q3 2,6). The ROC was 0.776 (95% CI 0.746-0.806, p<0.01). Conclusion: The SOFA score demonstrates strong discriminatory accuracy for prediction of clinical decompensation in patients presenting with COVID-19 at our urban hospital system. (Figure Presented).

Infrared-to-ultraviolet upconverting nanoparticles for COVID-19-related disinfection applications

In light of the COVID-19 pandemic, the demand for better UV sources has increased drastically. Recent advances in Ln-based upconverting nanoparticle (UCNP) designs have led to dramatic increases in efficiency – beyond what is possible in bulk upconverting material – for generating short-wavelength light from long-wavelength photons, pushing achievable upconversion into the UV regime. Such nanoparticles represent an ultimate source of ultra-local UV light, with applications in UV photocatalysis, 3D printing and manufacturing, and perhaps most importantly, health care. The goal of this article is to provide an assessment for the application of UCNPs as local UV sources for disinfection. We map out the potential for incorporation into PPE, focusing on N95 face masks as a model system. Performance and viability are evaluated based on recent UCNP findings and extrapolating cost trends following the recent example of commercialized semiconductor quantum dot nanoparticles.

Tumefactive acute disseminated encephalomyelitis after recent COVID-19 Infection: A Case Report

Objective: To report a case of a patient with recent mild to moderate COVID-19 infection who developed tumefactive acute disseminated encephalomyelitis. Background: Not applicable Design/Methods: Patient data were obtained from medical records from the University of Wisconsin - Madison Hospitals in Madison, WI, USA. Results: We report a 59-year-old man who presented with ongoing cognitive changes and pneumonia. He was repeatedly COVID-19 positive with minimal symptoms for 4 weeks prior to admission. He had a past medical history notable for atrial fibrillation, biventricular pacemaker, end-stage renal disease secondary to idiopathic fibrillary glomerulonephritis, on hemodialysis awaiting transplantation. While admitted, he developed progressive right sided hemiparesis and persistent, progressive encephalopathy manifesting primarily with disorientation, agitation, and aggression. CSF was notable for cell count of 7, protein of 48, and glucose of 65. Anti-MOG antibody and AQP-4 antibody were negative. A series of CT/CTA head imaging with and without contrast showed progressive multifocal supratentorial areas of white matter hypoattenuation, partially ring enhancing on contrasted portion of study. To better delineate these lesions, MRI head with and without contrast was performed and demonstrated progressive multi-focal large ovoid T2 FLAIR hyperintensities, consistent with tumefactive demyelinating disease. Significant improvement in mental status and right sided hemiparesis symptoms was observed with initiation of corticosteroids. Conclusions: This case study provides neuroimaging evidence and clinical correlation to support that SARS-CoV-2 and resultant COVID-19 infection can lead to tumefactive acute disseminated encephalomyelitis. This complication has not been previously documented associated with recent COVID-19 infection.

Safety and efficacy of a novel percutaneous tracheostomy protocol adapted to patients with COVID-19

Introduction and rationale: Many patients with COVID-19 admitted to the intensive care units require prolonged mechanical ventilation. Tracheostomy has been avoided due to increased risk of aerosolization especially during tracheal dilation resulting in increased risk for personnel infection. We describe our novel protocol to prevent exposure during percutaneous tracheostomy.Methods: Patients with COVID-19, on mechanical ventilation requiring prolonged mechanical ventilation were evaluated for bed-side percutaneous tracheostomy. The procedure was performed under bronchoscopic guidance and using a disposable bronchoscope. The scope was secured in position 1 cm from the end of the endotracheal tube with tape at the insertion site to allow the bronchoscopist to withdraw the ETT/bronchoscope en-bloc to the appropriate location in the trachea for adequate visualization during the procedure. Once the puncture point was identified, an expiratory pause was performed during which the trachea was punctured, a guide wire was placed, the anterior wall was dilated, and a tracheostomy was advanced and placed in the trachea. The time of the expiratory pause, any desaturation, complication and personnel conversion were measured.Results: A total of 18 percutaneous tracheostomies were performed. The total time of the expiratory pause, tracheal puncture to tracheostomy placement was thirty seconds to sixty seconds. There was no evidence of desaturation during the procedure, and there were no cases of staff conversion to positive COVID-19 status up to 14 days post procedure.Conclusions: we conclude that expiratory pause during percutaneous tracheostomy is safe, and importantly, may play significant role in decreasing aerosolization and staff exposure in patients with COVID-19 respiratory failure.

Respiratory disease, and treatment / thematic poster session one-person bronchoscopy in COVID-19 patients on mechanical ventilation is safe and decreases exposure rate to hospital personnel

Introduction and rationale:Many patients with COVID-19 are admitted to the intensive care units and require bronchoscopy for bilateral pulmonary infiltrates. Historically, the bronchoscopist is accompanied with a technician and a nurse for the procedure. Fear of increasing personnel exposure has been concerning. We present our protocol to prevent exposure during bronchoscopy.Methods:Patients with COVID-19, on mechanical ventilation requiring bronchoscopy were selected between March 2020 and October 2020. Instead of having the whole bronchoscopy team involved, and need for decontamination of equipment post procedure, a disposable bronchoscope was used, and the bronchoscopist was the only person to perform the procedure.Results:A total of 94 bronchoscopies were performed mostly for the evaluation of non-resolving or worsening infiltrates and respiratory failure. All procedures were completed with a single operator in the room, and the use of topical anesthesia through the ETT. The procedure time was less than five minutes, there was no desaturation, no immediate complications, and all procedures were performed with the recommended safety precautions including masks and contact protection garment. Importantly, there was no operator conversion to positive COVID-19 status.Conclusion:we conclude that in patients with Covid-19 receiving mechanical ventilation, oneperson bronchoscopy procedure is highly effective, safe and decreases staff exposure to COVID-19 .

Emergency Department Adaptations to COVID-19

BACKGROUND: The COVID-19 pandemic creates unique challenges for healthcare systems. While mass casualty protocols and plans exist for trauma-induced large-scale resource utilization events, contagious infectious disease mass casualty events do not have such rigorous procedures established. COVID-19 forces Emergency Departments (EDs) to simultaneously treat seriously ill patients and evaluate large influxes of 'worried well'-while maintaining both staff and patient safety. METHODS: The objectives of this project are to create an avenue to evaluate large surges of patients while minimizing hospital-acquired infections. After identifying areas for improvement and anticipating potential failures, we devised eight healthcare delivery innovations to address those areas and meet our objectives: (1) Parallel ED Lanes (2) Universal Respiratory Precautions (3) Respiratory Drive Through (RDT) (4) Medical Company (5) Provider Triage (6) ED Quarterback Patient Liaison (EDQB) (7) Virtual Registration (8) Virtual Ward. RESULTS: To date, no staff members have contracted COVID-19 within the ED footprint. Our RDT has seen 16,994 patients and the medical company 1,109. Provider triage has redirected 465 patients, while our EDQB has interacted with 532 and redirected 93 patients for same-day appointments with their Primary Care Manager (PCM). CONCLUSION: The system of care establish at our Military Treatment Facility (MTF) has been effective in maximizing staff and patient safety, while providing a new patient-centered healthcare delivery apparatus.