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1.
Value in Health ; 26(6 Supplement):S51-S52, 2023.
Article in English | EMBASE | ID: covidwho-20241061

ABSTRACT

Objectives: Long-COVID, the persistence of various symptoms after COVID-19 infection, is still not fully understood. This study evaluated the incidence and chronicity of post-COVID-19 conditions using administrative claims, which provide a large, generalizable sample, to provide insight into the scope of long-COVID in the United States. Method(s): Patients newly diagnosed with COVID-19 from 4/1/2020-3/31/2021 were identified in the MerativeTM MarketScan Commercial and Medicare databases. The first COVID-19 diagnosis served as the index date and patients were continuously eligible for 12-months pre- and post-index. Incident conditions were defined as a new diagnosis (no pre-period diagnoses) for one of 17 conditions of interest in the first 60-days of the post-period. Among patients with an incident condition, chronicity of the condition was assessed over the remaining post-period (long-term conditions). Result(s): The sample included 503,742 patients;mean+/-SD age was 39.5+/-16.5 and 46% were male. The most common incident conditions were respiratory symptoms (24.1%), fatigue (7.3%), muscle pain (6.0%), and headache (5.9%). Among patients with each of these conditions, long-term persistence was observed in 21.9% for respiratory symptoms, 36.8% for muscle pain, 18.3% for fatigue, and 16.0% for headache. Fewer than 5% patients evidenced incident anxiety, mood disorders, myocarditis, sleep disorders, or pulmonary embolism;however, among these patients, over 40% had long-term persistence of the condition. Among patients with long-term conditions, sleep disorders (248+/-98 days), mood disorders (239+/-96 days), anxiety (236+/-95 days), respiratory symptoms (233+/-92 days), and asthma (230+/-93 days) had the longest average durations of persistence, evidenced by continued claims over the post-period. Conclusion(s): With the continued presence of COVID-19 an understanding of the risk of long-term symptoms is needed to help manage patients both during and following infection. These findings provide some initial insight into the incidence and tenure of various conditions that are affecting patients diagnosed with COVID-19.Copyright © 2023

2.
Nieren- und Hochdruckkrankheiten ; 52(4):177, 2023.
Article in English | EMBASE | ID: covidwho-20236035

ABSTRACT

Objective: To examine whether established patient-reported outcome measures are suitable for capturing the impact of ARPKD in children and their families. Method(s): We assessed 44 children with ARPKD (40 families) with respect to patients' health-related quality of life ((hr- QOL) using PedsQLTM ESRD module) and mental health (strength and difficulties questionnaire (SDQ)) as well as family and caregiver burden (Impact on family score (IFS) und Ulm inventory of parental caregiver QOL (ULQIE)) and compared them to published data and 36 healthy control children matched for age and time. Result(s): Patients were aged 9.5 +/- 5.9 years (vs. controls 8.8 +/- 5.0, p = ns) and 21 (48%) were female (vs. 19 controls (53%), p = ns). Mean eGFR was 81 ml/min*1.73m2 (range 4 - 165);7 received dialysis and 11 had functioning kidney transplants (KTX, 2 combined with liver transplants). Eight patients had developmental delay secondary to medical complications, while chronic illness was an exclusion criterion for healthy controls. 61 caregivers of affected children had same gender-distribution (61% vs. 60% mothers) and age (both 42 +/- 7 years) and number of dependent children (1.8 +/- 0.9 vs. 2.0 +/- 0.8) as 57 caregivers of healthy children. The mean proxy reported PedsQL Total score was 77.5 +/- 10.6 (range 59 - 96). It correlated significantly to eGFR (r = 0.5, p < 0.01, (also within the subpopulations pre- and post-KTX)). Parents reported greater mental health problems in affected than in control children with a higher SDQ total score mainly due to higher scores in the hyperactivity and peerinteraction subscales. ULQIE revealed that parents of affected children had significantly lower levels of physical functioning, self-fulfillment and general QOL, but despite higher emotional burden scores they indicated similar satisfaction with family life. Impact on family scores were in a similar range to those of children with moderate to severe disabilities. Conclusion(s): The good spread of PedsQLTM ESRD-scores and their correlation to renal function indicates that it captures significant aspects of ARPKD, however, it may need further adjustment to include liver complications. All four chosen instruments revealed significant impact of ARPKD on hrQOL and mental health of affected children as well as family life and parental wellbeing in comparison to healthy controls. More problems with peer-interactions may also be due to more stringent shielding of chronically ill children from social contacts during the COVID pandemic compared to healthy children.

3.
Journal of Cardiac Failure ; 29(4):692-693, 2023.
Article in English | EMBASE | ID: covidwho-2301571

ABSTRACT

Background: The role of genetic conditions in the development of cardiomyopathy is well established;however, recognition and referral for genetic testing remains underutilized. Systematic review of complex cases can increase general awareness in this area of practice. Here we describe the case of a patient with resolved severe stress induced cardiomyopathy (SIC), who was ultimately found to have heterozygous transthyretin-mediated amyloidosis (TTRA). Case: A 27-year-old man (family history positive for a brother status post heart transplant) presented with ataxia and cough due to legionella pneumonia. TTE showed left ventricular (LV) diastolic diameter of 6.2cm, LV ejection fraction 20-25%. He suffered rapid decompensation with mixed cardiogenic/septic shock requiring peripheral VA ECMO and Impella-CP placement. Course notable for brief cardiac arrest on hospital day (HD) 2, incidental diagnosis of COVID 19 on HD 14, conversion to VV ECMO on HD 15, and ECMO decannulation on HD 23. Repeat TTE prior to discharge showed normalization of biventricular function. Discussion(s): Despite resolution of refractory shock and normalization of biventricular function prior to discharge, the TTE finding of mild LV dilation and strong family history prompted outpatient pursuit of genetic testing which revealed a heterozygous TTRA mutation (val142ile). Work-up to assess cardiac involvement included: a 99m-technetium pyrophosphate scintigraphy found to be indeterminate, an aborted endomyocardial biopsy due to inability to smoothly advance a bioptome (presumably related to ECMO cannulation), and a cardiac MRI (pending at the time of this submission). If a cardiac phenotype is discovered, the patient will be started on targeted treatment of cardiac amyloid. Screening of first-degree family members has been initiated. Conclusion(s): Given the current state of under-diagnosis of genetic cardiomyopathies and its association with significant morbidity and mortality, it is prudent to consider genetic testing in young patients based on clinical history. Examples of clinical scenarios to prompt further testing include: anatomical findings (i.e. cardiac chamber enlargement, left ventricular hypertrophy), family history of cardiomyopathy, or clinical markers suggestive of alternative diagnoses (i.e. neuropathy, renal insufficiency, mediastinal lymphadenopathy). This thoughtful and algorithmic use of genetic testing may help improve long-term patient outcomes given improvements in both detection, family screening, and treatment for disease-specific cardiomyopathies.Copyright © 2022

4.
56th Annual Hawaii International Conference on System Sciences, HICSS 2023 ; 2023-January:3326-3335, 2023.
Article in English | Scopus | ID: covidwho-2297253

ABSTRACT

Chronic diseases have been declared as an invisible epidemic by the World Health Organization (WHO, 2005). Over the past fifty years, the prevalence of chronic conditions has increased, leading to the disease burden caused by cancer, cardiovascular diseases, diabetes, musculoskeletal conditions, and mental and substance use disorders (DOH, 2021). Chronic patients need to reimagine how they will empower themselves to effectively manage and monitor their health and wellbeing in a COVID-19 era, when frequent in-person health care visits will no longer be feasible. In this study, we propose the features for the design of a mobile based application that will aid chronic patients and end-users to self-manage and monitor their health during the pandemic era. Based on an empirical investigation involving pharmacists and researchers, we designed and developed a prototype capable of empowering chronic patients. This study particularly focuses on how technological interventions can help chronic patients to self-manage and monitor their health and wellbeing related to COVID-19 where the user expectations are met with less attrition rates. © 2023 IEEE Computer Society. All rights reserved.

5.
New Zealand Medical Journal ; 136(1568):109-110, 2023.
Article in English | EMBASE | ID: covidwho-2258279
6.
Iranian Journal of Endocrinology and Metabolism ; 24(2):92-100, 2022.
Article in Persian | EMBASE | ID: covidwho-2283316

ABSTRACT

Introduction: The utilization of health services is an opportunity for using health services by the needy. Since COVID-19 can have significant effects on all life dimensions, including the utilization patterns, especially in patients with non-communicable diseases (NCDs), this study aimed to determine and compare the extent of utilizing health services by individuals with and without NCDs in the Shahrekord cohort study before and during the COVID-19 pandemic. Material(s) and Method(s): The present cross-sectional study was conducted on 760 patients of the age group of 35-70 years in the Shahrekord cohort study, which addressed the urban areas of Shahrekord and the rural regions of Ardel city during two separate periods. For all patients, the questionnaire on benefiting from health services was completed. The data was collected using the telephone interview method and then analyzed using SPSS software. Result(s): The mean and standard deviation of the age was 44.95+/-8.65 years in the patients without NCDs and 53.38+/-8.60 years in those with NCDs(p<0.001). The rates of medical service reception in those without common NCDs before and during the corona epidemic were 3.2% and 15.3%, respectively. In those with common NCDs, the rates were 7.1% and 27.1%, respectively (p<0.001). During the coronavirus epidemic, the average duration of receiving service, duration of service, paid fee, and the frequency of receiving service were longer in the participants with chronic NCDs (P<0.001). Conclusion(s): The reception of medical services and outpatient services in the two groups of patients with and without NCDs during the coronavirus pandemic increased compared to the pre-pandemic period. This point should be considered as a lesson learned from the epidemic by the health system policymakers and planners to lay the grounds for providing care services, especially for chronic patients during epidemics.Copyright © 2022, Research Institute for Endocrine Sciences. All rights reserved.

7.
Oncogematologiya ; 17(2):107-120, 2022.
Article in Russian | EMBASE | ID: covidwho-2145727

ABSTRACT

In the era of COVID-19, the chemotherapy of patients with hematological malignancies has become the cornerstone in hematology. Secondary immunodeficiency as a result of hemoblastosis, predisposes to a more severe course of coronavirus infection, and specific antitumor treatment only exacerbates patients immunodeficiency. Thus, there is a problem of conducting chemotherapy during the COVID-19 pandemic. At the moment, there are no unified recommendations for risk assessment and choice of treatment for patients with oncohematological diseases and concomitant coronavirus infection. In this article, we present a series of clinical cases of patients with hematological malignancies diagnosed with coronavirus infection at the onset of a hematological disease or after chemotherapy. Patients with long-term persistent coronavirus infection requiring specific anticancer treatment were allocated to a separate group. We hope that this article will help to set a vector for further research, as well as serve as a clear example of the clinical situations that a hematologist may face during the COVID-19 pandemic. Copyright © 2022 ABV-Press Publishing House. All rights reserved.

8.
Research and Practice in Thrombosis and Haemostasis Conference ; 6(Supplement 1), 2022.
Article in English | EMBASE | ID: covidwho-2128261

ABSTRACT

Background: Oral anticoagulation therapy with warfarin requires frequent monitoring level of anticoagulation by the international normalized ratio (INR). Aim(s): Therefore, this systematic review aimed to systematically summarize anticoagulation control, treatment outcomes, and associated factors in long-term patients receiving warfarin in Africa. Method(s): The literature search was conducted in PubMed, Cochrane Library, African Journal of Online databases, Google Scholar, and Google. An advanced search strategy was computed to retrieve relevant studies related to anticoagulation control and outcomes. Duplication, title and screening, and full-text assessment were conducted in Covidence software. Study quality was assessed using the Joanna Briggs Institute Critical appraisal quality assessment tool. The systematic review is registered in PROSPERO (CRD42021260772) and performed based on the PRISMA guideline. Result(s): Out of 298 identified articles, 18 articles were eligible for the final review and analysis. The mean of 39.4 +/- 8.4% time in therapeutic range (TTR) (29.4% to 57.3%), 36.7 +/- 11.5% TTR (range 25.2-49.7%) and 46% TTR (43.5-48.5 %) was computed from studies that determined TTR by Rosendaal, direct and cross-section- of- the- files methods, respectively. The lowest percentage of TTR was 13.7%, while the highest was 57.3% was observed in this review. The highest percentage of patients (32.25%) who had TTR >= 65% was reported in Tunisia, but the lowest percentages were in Namibia (10%, TTR >= 65%) and Kenya (10.4%, TTR >= 70%). Generally, 10.4-32.3% of study participants achieved desired optimal anticoagulation level. Regarding secondary outcomes, 1.6-7.5% and 0.006-59% of patients experienced thromboembolic complications and bleeding events, respectively. The presence of chronic comorbidities, taking more than two drugs, and presence of medications that potentially interact with warfarin was the frequently reported predictors of poor anticoagulation therapy. Conclusion(s): Oral anticoagulation control was suboptimal in patients taking warfarin as evidenced by low TTR in Africa. Therefore, there is an urgent need for further improving oral anticoagulation management service.

9.
Journal of Endourology ; 36(Supplement 1):A87, 2022.
Article in English | EMBASE | ID: covidwho-2114669

ABSTRACT

Introduction &Objective: Patients with long term ureteric stents for urinary diversion need regular changes, done at intervals appropriate for their condition, type of stent and adjusted to stent encrustation risks. This is usually done under General Anaesthesia in the operating room. We present our series of patients on ureteric stents with change of stents done under local anaesthesia in the endoscopy suite as an outpatient day procedure. Method(s): Since July 2021, we started a stent change service for our patients on long term ureteric stents done solely by Urologists in the outpatient day procedure setting under Local anaesthesia. This is done in the outpatient endoscopy suite away from the operating theatre, with flexible cystoscopy aided by fluoroscopy. We review our series of ureteric stent changes including indications and technical success rate of stent change. Result(s): 56 patients underwent stent change under local anaesthetic from 7th July 2021 to 16th Feb 2022, with mean age of 75 years old (range 55 to 97). 24(42%) were male and 32(57%) female. 9 patients had bilateral stents changed (16%), with the rest unilateral. Etiology wise, 34 (61%) had strictures, 13 (23%) had stones, and 9 (16%) had extraluminal compression. Mean duration from the last stent change was 4.6 months (SD = 1.38) based on clinical condition and stent type. 54 (96%) of patients had successful stent changes. The two patients with unsuccessful stent changes had failed retrograde wire access, one with tight extraluminal compression and the other with severe stent encrustation. Advantages of the new service for the patients include avoiding risks of sedation or general anaesthesia, and procedure performed as day surgery with decreased duration of hospital stay, particularly in this time of COVID-19 pandemic. From a resource point of view, this has freed up operating theatre space and anaesthetist manpower to focus on Urological procedures needing general anaesthesia, decreasing waiting time for higher acuity cases. Conclusion(s): Moving flexible cystoscopy guided ureteric stent change from major operation theatre under general anaesthesia to an ambulatory endoscopy center setting under local anaesthesia is a feasible and safe option for patients with long-term ureteric stents. It avoids risk of general anaesthesia, is potentially cost saving and conserves hospital resources.

10.
Chest ; 162(4):A1371, 2022.
Article in English | EMBASE | ID: covidwho-2060811

ABSTRACT

SESSION TITLE: Problems in the Pleura Case Posters 2 SESSION TYPE: Case Report Posters PRESENTED ON: 10/17/2022 12:15 pm - 01:15 pm INTRODUCTION: Hematologic malignancies can often be complicated by pleural effusion due to leukemic infiltration of the pleura (1). Long term management of resulting chronic plural effusion can be complicated when there is evidence of trapped lung. Subsequent infection may lead to development of chronic empyema which can be difficult to manage in chronically ill patients (2). CASE PRESENTATION: A 65-year-old male with history of chronic myeloid leukemia status post stem cell transplant was admitted with dyspnea and cough. Computed tomography (CT) chest imaging revealed increased volume loss on the left with new air fluid level in a chronic left pleural effusion. (Image 1) Patient's history was significant for chronic left pleural effusion, which was first identified in 2015 and found to be a malignant effusion with evidence of leukemia involvement. Repeat imaging in 2018 (Image 2) revealed continued chronic pleural effusion. Patient was admitted in August 2021 with COVID-19 pneumonia and CT Chest showed chronic loculated left sided pleural effusion. Patient elected to continue to monitor the chronic effusion, which was completed as outpatient every 4 to 6 weeks (Image 3). He remained clinically stable until the presentation to a hospital in January 2022. The chronic empyema was initially managed with tube thoracostomy, intrapleural fibrinolytics and antibiotics. Cultures were significant for Moraxella catarrhalis and Streptococcus pneumoniae. He was determined to be a poor surgical candidate for decortication and treatment with empyema tube was initiated. The empyema tube was incrementally withdrawn as an outpatient and subsequently removed with good clinical recovery. DISCUSSION: Chronic empyema is characterized by thickened parietal and visceral pleura which limits the ability of the lung to re-expand. Surgical management with decortication is the definitive management, however, in poor surgical candidates, management becomes more complicated. Open pleural drainage with an open pleural window can be considered. An alternative option converts tube thoracostomy to open pleural drainage, as was utilized in this patient (2). While comparison of surgical vs non-surgical management of empyema suggests similar mortality (3), non-surgical management of chronic empyema needs more investigation to determine the optimal treatment modality. CONCLUSIONS: Empyema remains a difficult condition to manage. Treatment modalities of chronic empyema are limited in those patients who remain poor surgical candidates. Reference #1: Faiz SA, Sahay S, Jimenez CA. Pleural effusions in acute and chronic leukemia and myelodysplastic syndrome. Curr Opin Pulm Med. 2014 Jul;20(4):340-6. Reference #2: Biswas A, Jantz MA, Penley AM, Mehta HJ. Management of chronic empyema with unexpandable lung in poor surgical risk patients using an empyema tube. Lung India. 2016;33(3):267-271. Reference #3: Redden MD, Chin TY, van Driel ML. Surgical versus non-surgical management for pleural empyema. Cochrane Database Syst Rev. 2017;3(3):CD010651. Published 2017 Mar 17. DISCLOSURES: No relevant relationships by Shannon Burke No relevant relationships by Abigail Go No relevant relationships by Jen Minoff no disclosure on file for Ravi Nayak;

11.
Chest ; 162(4):A421, 2022.
Article in English | EMBASE | ID: covidwho-2060592

ABSTRACT

SESSION TITLE: Severe and Unusual Blastomycosis Infections SESSION TYPE: Rapid Fire Case Reports PRESENTED ON: 10/18/2022 12:25 pm - 01:25 pm INTRODUCTION: This is a case of a patient 74-year-old immunosuppressed woman presenting with a one-week history of skin lesions. CASE PRESENTATION: A 74-year-old woman with Crohn's disease (on weekly adalimumab);pulmonary hypertension (RVSP 76 mmHg);OHS/OSA, on home BPAP 17/7 cmH2O;and morbid obesity presented with a one-week history of skin lesions. She was seen by her primary care physician two days prior with skin lesions, shortness of breath, and decreased vision. She was hypoxic during the visit and given doxycycline for empiric treatment of pneumonia. She denied recent travel or exposure to animals. On admission, she was afebrile (36.9C) and saturating 98% on 2 L nasal cannula. She appeared chronically ill with mouth ulcers and an eroded nodule with overlying hemorrhagic crusting and peripheral pustular area above her right eyebrow (figure 1). Throughout her skin, she had multiple erythematous papules, some with overlying vesicles/pustules. Labs were significant for a leukocytosis of 19.3 with left shift, lactate of 3.5, serum creatinine of 1.9 (likely higher than patient's previous baseline of 1.7 with previous history of recurrent AKIs on CKD), elevated inflammatory markers, and normal ALT/AST. Influenza and COVID were negative. A CT chest showed consolidations and numerous pulmonary nodules highly suspicious for an infectious or inflammatory process (figure 2). She was treated empirically with vancomycin, piperacillin-tazobactam, valacyclovir, and amphotericin B, the latter given the concern of blastomycosis. During her hospitalization, she had further respiratory failure requiring intubation and multiorgan failure. Disseminated blastomycosis was confirmed via a skin biopsy which demonstrated pyogranulomatous inflammation with numerous broad-based budding yeasts (figure 3) and supported with a bronchoalveolar lavage (BAL) culture growing the same. Given her continued decline, her medical decision maker decided to transition the patient to hospice care. DISCUSSION: Blastomycosis is a systemic pyogranulomatous infection that is caused from the inhalation of the conidia form of the dimorphic fungus. It can manifest as asymptomatic infection, acute or chronic pneumonia, or extrapulmonary disease. BAL yields a positive diagnosis in 92% of patients and definitive diagnosis requires growth of the organism from a clinical specimen. Without appropriate treatment of amphotericin B or one of the azole antifungals, the disease had a 90% mortality rate. CONCLUSIONS: Prompt recognition of multiorgan failure secondary to blastomycosis is important for early treatment and improved survival in immunocompromised patients Reference #1: 1)Chapman, S W et al. "Endemic blastomycosis in Mississippi: epidemiological and clinical studies.” Seminars in respiratory infections vol. 12,3 (1997): 219-28. Reference #2: 2)Saccente, Michael, and Gail L Woods. "Clinical and laboratory update on blastomycosis.” Clinical microbiology reviews vol. 23,2 (2010): 367-81. doi:10.1128/CMR.00056-09 Reference #3: 3)Chapman, Stanley W et al. "Clinical practice guidelines for the management of blastomycosis: 2008 update by the Infectious Diseases Society of America.” Clinical infectious diseases : an official publication of the Infectious Diseases Society of America vol. 46,12 (2008): 1801-12. doi:10.1086/588300 DISCLOSURES: No relevant relationships by Jennifer Duke No relevant relationships by Ashley Egan

12.
Journal of Pediatric Gastroenterology and Nutrition ; 75(Supplement 1):S357, 2022.
Article in English | EMBASE | ID: covidwho-2057898

ABSTRACT

Background: Chronically ill pediatric patients face several challenges when going to the Emergency Department (ED) or specialty care clinic. Access to specialty care providers and transportation to appointments are inherent challenges for patients that live out of state or a long distance from their specialist home. Medical complexity of certain populations of patients who require life sustaining equipment may impede their mobility and their ability to reach their clinician promptly. In November 2020, Children's Hosp CO was awarded a one-time FCC COVID -19 Telehealth grant to provide patients with a handheld telehealth device (HTD) to provide on-demand health care and be seen at home by their established specialty provider. This HTD sends real time vitals (VS) such as temp, HR, BP, heart and breath sounds, and skin evaluation directly to their EHR for future provider clinic assessment. This data may improve the quality of the telehealth visit (THV) in real time and result in a more meaningful clinical assessment and plan. In this study, selected patients will use this HTD for all acute care visits and any additional follow-up appointments. Overall, the HTD was intended to be used during THVs preceding the patient's annual in person visit. Despite being in a remote location, the use of a HTD may improve continuity of care and specialty provider access. Method/Data: The goal of this project was to identify and implement a HTD in selected patients to enable immediate access to VS during a home health care assessment. This study was piloted in 3 ambulatory specialty clinics: Adult Special Care, Pediatric Pulmonary, and the Pediatric Liver Transplant. The original Go-live date for this study was 10/4/2021. Study background: one nurse from each clinic volunteered to participate in the HTD pilot program and received in-person training by the IT and informatics departments. Providers selected by the research team attended a 1 hour online training session with the informatics team and the HTD's IT support to learn about HTD functionality and how to operationalize its use during a THV. Patients selected by the provider included those who speak English, had access to 2G WIFI, and required frequent follow-up. Consent was obtained then our biomedical department shipped the HTD directly to the patient's home to begin use. A nurse met with the family to provide HTD education before their first THV with their provider to ensure that the HTD connected properly to the Wi-Fi and blood pressure cuff was Bluetooth connected to the device. At the conclusion of the visit, questionnaires were issued to families and providers to assess their overall satisfaction with the device. Information from these questionnaires was used to make needed adjustments to improve patient and provider satisfaction. AN EHR tracking tool showed travel time saved, potential cost savings to families, and frequency of visits completed in telehealth versus in person. These will be followed overtime to determine the benefit and impact of this HTD. Discussion(s): Currently 3 HTD have been sent to liver transplant patients who are followed in the Liver Transplant clinic. These patients are ages 18 months, 2 years, and 18 years old. With preliminary information, we have found delays in getting the HTD to patients, WIFI connectivity issues, multiple user limitations, and provider licensing roadblocks. To address these findings, one liver transplant provider is in the process of obtaining licensures in other states. We have also found that we are unable to have multiple providers in the same visit at once. Our team has been working closely with the HTD team to work on getting upgrades completed to fix these issues. However, our informatics team has received positive feedback from both the providers and families who have used the HTD. One family was happy that they no longer had to go to their pediatrician's office for weekly blood pressure checks. They commented that connecting to the device was "quick and easy". One provider has informed the team that they have found the visit to go smoothly and the HTD real time vitals helped with overall clinical decision making. Conclusion(s): The use of a HTD in this very limited pilot study has provided us with the knowledge necessary to enhance its application in the home patient environment. After overcoming the unanticipated challenges shown by this pilot trial, the three selected clinics will begin recruiting patients for this study. Within a year, we anticipate data will be collected from the projected sample. We are hopeful the data collected will prove to demonstrate the use of a HTD will improve patient outcomes by providing real time data, reduce time and travel expense, and promote an emotional sense of security for families who care for chronically ill children who live a great distance from their specialty care provider.

13.
Journal of the Intensive Care Society ; 23(1):185-186, 2022.
Article in English | EMBASE | ID: covidwho-2043014

ABSTRACT

Introduction: Admission to intensive care is a life changing event for people which can result in long term detriments to health, function and quality of life.1 Extensive literature exists and guidelines have been written supporting rehabilitation for these patients.2 More qualitative data is also being carried out on patients' perspectives of rehabilitation in intensive care. This has highlighted 'the noxious cycle of ICU' where patients describe fatigue, boredom and lack of concentration.3 Family presence in intensive care can improve a patient's recovery.4 The COVID-19 pandemic has led to more isolation for patients due to visiting restrictions. Partaking in creative activities is known to have many benefits for long stay hospital patients and can have positive impacts on their recovery.5 This led us to the development of a leisure activity trolley with the focus on enhancing well-being in long stay patients. Objectives: The aim of this project is to enhance wellbeing in intensive care patients. This was done by supporting patients to engage with leisure activities. Methods: A mixed methods questionnaire was used to collect data from four long stay patients. This data was used to gauge patients' interests in participating in leisure actives and identify what equipment would be enjoyed. An application to the hospital patient amenities fund was made and funding was secured to purchase a variety of items based on the results of this questionnaire. All long stay patients throughout the hospital including ITU and step down who were awake and medically stable were invited to participate. Patients were given a preactivity questionnaire to gather information on their usual interests and rate their current mood using a Likert scale. This informed us to make suggestions on what they may enjoy. We also provided them with our 'mindfulness menu' to select what they'd like to do. Patients were then set up with their selected activities and given the option to engage alone or in the company of a therapist (see Image 1). A post-activity questionnaire was completed to explore if patients enjoyed the activity. Patient mood following activity was also re-collected using a Likert scale. Patients could continue to partake in the activities chosen, try new ones, or cease to partake all together. Post activity questionnaires were completed after each session. Results: 37 different patients were approached on 96 occasions. They chose to engage in activities on 87/96 (90%) of occasions (see Table 1 for activities). On average, patients' moods improved from a Likhert score of 4.6/10 to 7.2/10, a 36% increase, following participation in a leisure activity. Patient satisfaction with activities offered on initial assessment and on discharge also improved. From this small sample size, patient's well-being was enhanced by participation in leisure activities. Conclusion: Overall, we have found this project to be successful thus far in improving well-being for intensive care patients. We plan to continue to offer these activities for our patients and hope it continues to improve patient wellbeing and recovery.

14.
Journal of the Intensive Care Society ; 23(1):143-144, 2022.
Article in English | EMBASE | ID: covidwho-2042974

ABSTRACT

Introduction: Due to the COVID-19 pandemic there has been an unprecedented number of hospital and Intensive Care Unit (ICU) admissions for respiratory failure. This has required a significant and sudden increase in ICU capacity. 1,2 Due to severe pulmonary infection and inflammation, patients have presented with acute respiratory distress syndrome (ARDS) with an associated inability to ventilate lungs with poor compliance. This has led to an increased requirement for extra corporeal membrane oxygenation (ECMO) support. This is only available in six commissioned centres across the United Kingdom.3 Objectives: The objective of this is to present a case study of a long-term patient in ICU with a prolonged duration on ECMO. This highlights the complex, mutli-dimensional physiological and psychological impact of recovery and rehabilitation in patients following a severe physical illness. Methods: Figure 1 shows the timeline of significant events during the patient's hospitalisation and admission at the ECMO centre. Due to the nature of a long ICU admission, the patient's condition fluctuated throughout their stay. Rehabilitation was impacted physically by the patient's limited ventilatory reserve caused by lung damage due to COVID. A severe sacral moisture lesion also limited their ability to sit in a chair for longer than one hour and perform sustained sitting on the edge of the bed activities. Psychologically the patient was limited due to significant anxiety and agitation. There were a number of barriers and challenges to rehabilitation whilst the patient was on ECMO as well as post ECMO decannulation. These challenges are detailed in Figure 2. Results: Despite the challenges, the patient was able to participate in physical rehabilitation and was provided psychological support by the psychology team. At their peak ability, the patient was able to perform 12 steps with maximal assistance of three staff. The patient's Chelsea Critical Care Physical Assessment Tool (CPAx) scores can be seen in Figure 3. There was marked difference in the patient's ability to meet the physiological demand of rehabilitation with the ECMO support and without. Following ECMO decannulation the patient struggled with fatigue, hypercapnia and increasing dependency on the ventilator. These issues led to a decline in ability and longer periods of tachypnoea and recovery. Conclusion: Supporting patients after a critical illness requires physical and psychological rehabilitation from the whole MDT. This example of a patient's recovery both during and post ECMO support due to COVID-19 shows the complex relationships affecting the patient's ability to improve and progress.

15.
HemaSphere ; 6:3935, 2022.
Article in English | EMBASE | ID: covidwho-2032167

ABSTRACT

Background: In the course of lymphoproliferative diseases, an immunodeficiency of humoral or cellular origin has been described. Infectious complications of common or atypical origin alter patients' lifestyles or result in severe, life-threatening hospitalizations. Hematology patients are prone to opportunistic infections after viral infection. In Estonia, chemotherapy for haematological patients is mainly covered in two regional centers in Tartu (University Hospital) and in Tallinn. The outpatient consultations are also covered in other parts of Estonia. In times of pandemic, when lockdowns are changing the situation and it has been difficult to travel to large centers, local hematology care needs for high-risk hematology elderly patients are growing. Aims: In the case of lymphoproliferative diseases, a secondary immune deficiency with severe infections can develop during the course of therapy, which is objectively discovered by immunoglobulin testing (IgG), and replased by immunoglobulin substitution. According to Kreuth IV, the value for prophylactic IgG replacement therapy is below 4g/l Methods: Review of the 20 case records of the two hospitals in Estonia, in Pärnu and in Kuressaare. Results: There are in regulare treatment or watching in Pärnu center and in Kuressaare center about 80 patients with lymphoproliferative disease. From them needed according to IgG status below 7(ref 7-16) 20 patients. The mean age of patisents is 70.8 ( range 38-89). The mean basic IgG (ref 7-16) in patients in Immunoglobulin treatment is 4,49 (range 3.3-6) .The intervall for prophylactic replasment was 4.6 or 8 weeks in 20 patients. From those 8 patients had SARS-Cov2 during this period, no patient was dying because of SARS-Cov2 infection and in 4 patients there was SARS-COV2 IgG pos later, in one patients SARS-COV2 IgG was negative afther the severe infection, in 3 patients is SARS-COV2 IgG not known afther frecovery from disease. Two patents died: one of secondary Pulm tumor related infection and one of sigmoidal ca, who had 6 months earlyer COVID19 severe infection. From 20 patients 9 diceided to have vaccination and 6 got no SARS-COVIgG antibodyes afther that. All patients had during 01.06.2019-01.02. 2022 years in some period immunosupressive treatment. Summary/Conclusion: We recommend the individualized protection of vulnerable hematologyc diseases patients with long-term illness. Secondary immunodeficient patients need during pandemic when hospital beds are overgrown immunoglobulin replasmenttherapy to prevent their unneccesary hospitalization.

16.
Cancer Research ; 82(12), 2022.
Article in English | EMBASE | ID: covidwho-1986490

ABSTRACT

Individuals testing positive for BRCA1/2 genetic mutations, or hereditary breast and ovarian cancer mutations, are 33-55% more likely than women without these mutations to develop breast and/or ovarian cancers before the age of 70. While research involving these genetic mutations continues to emerge, there remains unanswered questions regarding prophylactic experiences and subsequent impacts on mental health within subgroups of BRCA1/2-positive women. The purpose of this analysis was to explore the impact of BRCA1/2 mutations, prophylactic surgeries, and surveillance regimens within the scope of everyday life within a sample of BRCA1/2 positive women from medically-underserved backgrounds living in the United States (US). A sample of 211 US adult women who have tested positive for BRCA1/2 mutations within the past 5 years and who identify with one or more medically-underserved populations (racial, ethnic, or sexual minority, person with a physical disability, chronically-ill, those in poverty, immigrant populations) elucidated compelling qualitative data. A total of 169 (80.1%) women completed open-ended questions at the end of the online survey. Thematic analysis was utilized to identify themes and subthemes concerning mental health, sources of stress, and methods of stress relief. The focus of the current analysis is on the sources of stress identified by the respondents. Fourteen subthemes were identified. The four most common stressors were concerns about post-treatment recovery (19% of respondents), recurrence of a new cancer (15%), medical unknown of having a genetic mutation that increases the risk of cancer (14%), and having to schedule and plan for continual surveillance (12%). The next five subthemes ranged from 7-9% and include waiting for medical results, personal finances and covering medical expenses, impact of the COVID-19 pandemic, pre-operative anxiety, and worrying about insurance coverage. Our findings support previous research on cancer stressors for women while adding important qualitative elements for a richer understanding. Furthermore, since much of the research on the lived experiences of BRCA1/2 has been on highly-educated, non-Hispanic white women, few studies have focused entirely on medically-underserved populations, which was the entirety of our sample. This work adds an important intersectional lens in which to better understand the experiences of living with a BRCA1/2 mutation.

17.
British Journal of Dermatology ; 186(6):e249, 2022.
Article in English | EMBASE | ID: covidwho-1956691

ABSTRACT

Bullous pemphigoid (BP) triggered by vaccination is a rare but recognized phenomenon. We report two cases of BP triggered by covid-19 vaccinations. A 64-year-old woman was referred with a recurrent blistering rash, erupting within 7 days of both her first and second doses of the Pfizer COVID-19 vaccine. She presented with widespread annular erosions and some targetoid lesions on an urticated background across her torso and limbs. Full blood count reported significant eosinophilia. Skin biopsies were consistent with BP, demonstrating linear deposition of IgG and C3 at the dermoepidermal junction. Treatment with prednisolone 60 mg once daily and topical clobetasol propionate was commenced. Her condition progressed leading to the addition of mycophenolate mofetil 500 mg twice daily, later increased to 1 g twice daily. This was effective;autoimmune bullous skin disorder intensity scores improved from 44 to 16.5 within 1 month. An 82-year-old man presented with a 5-month history of a widespread blistering rash, with onset 2 weeks following his second dose of the AstraZeneca COVID-19 vaccine. Skin histopathology confirmed BP. He was treated with topical clobetasol propionate, a 30-day course of doxycycline and prednisolone 40 mg once daily, which is being reduced in correlation with clinical response. There have been 13 reported cases of BP triggered by COVID-19 vaccinations;these two cases highlight more are likely to occur. We need to be prepared to manage these patients with long-term immunosuppressive therapies and support them in making a shared decision to complete their vaccination programme, including booster doses during the ongoing pandemic.

18.
Journal of Comprehensive Pediatrics ; 13(2), 2022.
Article in English | EMBASE | ID: covidwho-1939346

ABSTRACT

Background: Depending on the level of care and the availability of pediatric intensive care unit (PICU) facilities, the mortality rate of acutely ill children varies in PICUs. Referral of patients from other medical centers, admission during working or off-work hours, and nosocomial infections are the most important risk factors for the high mortality rates in PICUs. Objectives: The present study aimed to investigate the characteristics and factors related to the risk of mortality in pediatric patients admitted to the PICU of a pediatric hospital in Qazvin, Iran. Methods: This cross-sectional study was performed on children admitted to the PICU of a pediatric hospital in Qazvin, Iran, between June 2017 and June 2020. During this period, a total of 1504 children, aged one month to 13 years, were admitted to the PICU, and 106 cases expired. The patients’ clinical data (ie, demographic characteristics, underlying disease, cause of death, and length of hospital stay) was extracted from their medical records. A prolonged length of stay was defined as more than 28 days of PICU admission. Results: A total of 106 children, with a mean age of 3.89 ± 3.23 years, expired during the study, with 41 (38.7%) cases being male. Among the investigated cases, 61 (57%) were < 2 years, 18 (17%) were 2 - 5 years old, and 27 (26%) were ≥ 6 years. In these patients, sepsis (13/82, 15.85%) and pneumonia (10/82, 12.19%) were the main causes of death. Other mortalities (14/106) were due to infectious diseases (gastroenteritis, influenza, and coronavirus disease) and non-infectious diseases (aspiration, anaphylaxis, and electrocution). The majority of children with a prolonged length of stay were < 2 years (17/23, 74%). The length of PICU stay was shorter in children with a lower weight percentile (P = 0.016). Conclusions: Following infectious diseases, congenital abnormalities and genetic disorders were the most common causes of pediatric mortality. Chronically ill children were more likely to be underweight and develop nutritional disorders, leading to the deterioration of their condition.

19.
European Stroke Journal ; 7(1 SUPPL):487-488, 2022.
Article in English | EMBASE | ID: covidwho-1928095

ABSTRACT

Background and aims: As the Omicron variant emerged and became prevalent within the UK, an increased risk of nosocomial COVID-19 infection presented itself in this busy London Stroke Unit. This posed particular risk to the Acute Stroke Unit patients some of whom had been inpatients for up to five months and therefore missed the opportunity for vaccination under the nationwide scheme, or who had not taken up the vaccine when offered in the past. An improvement project was undertaken to provide inpatient vaccination to these vulnerable patients. Results: Of the 18 patients admitted to the unit at the beginning of December 2021, 60% had not received the full complement of COVID vaccinations. 22% of patients had not received any doses of COVID vaccination. 7 patients were identified for vaccination in the first round. 3 others would have been eligible but unfortunately tested positive prior to the first vaccination date. Informed consent was gained from those patients with capacity (40%). Next of kin were informed for the remaining patients, with a best interest decision made to proceed. The vaccination status of patients is to be reviewed in weekly Multidisciplinary Team Meetings. Conclusions: Assessment of COVID vaccination status for long term patients will play a key role in the prevention of nosocomial infection in Stroke patients and should be undertaken where possible.

20.
American Journal of Respiratory and Critical Care Medicine ; 205(1), 2022.
Article in English | EMBASE | ID: covidwho-1927804

ABSTRACT

RATIONALE: Long-term quality of life is a significant concern for survivors of sepsis and acute respiratory failure (ARF). Financial burdens await as many patients never return to work. Notably, the duration of the ICU stay significantly correlates with the severity of physical impairment and up to 25% of skeletal muscle is lost within one week in the ICU. The recent pandemic due to the severe acute respiratory syndrome coronavirus-2 (SARS-CoV2) is likely to exacerbate these issues. We have previously reported that metabolites related to mitochondrial bioenergetics status can predict acute patient outcomes. Here, we propose that these same metabolomic and mitochondrial biomarkers of mortality also predict physical function in survivors. METHODS: To test this hypothesis, we performed a retrospective analysis of metabolomic changes in ARF survivors using ultrahigh performance liquid chromatography mass spectrometry. Six months after ICU admission, physical function was determined by the short physical performance battery (SPPB), an objective physical function measurement assessing gait speed, balance and lower extremity strength. A total of 70 consecutively enrolled patients were selected, of which 35 had good physical function (SPPB ≥ 7) and 35 had poor physical function (SPPB ≤6). The patients were matched for age, race and sex. Metabolomic analysis of patient's serum was measured at ICU admittance (n=70), 5d-post admittance (n=20) and discharge (n=20). RESULTS: More than 1250 named compounds were identified. There were only 19 metabolites that were significantly different at admittance (ANOVA;p < 0.05), of which seven were bile acids. However at discharge, despite less patient samples tested, 151 metabolites were significantly different (ANOVA;p < 0.05). Specifically, we found that 10 lysophospholipids, eight bile acids, three TCA cycle metabolites, eight kynurenine-related metabolites and nine urea cycle metabolites were significantly different. Many of these pathways have previously been shown to be altered in nonsurvivors of sepsis and ARF. CONCLUSIONS: Findings suggest that bioenergetic abnormalities arising during the acute phase of recovery may be persistent and predict longer-term decrements of physical function in survivors of ARF. Larger retrospective and prospective studies are needed to confirm these preliminary findings;however, predicting poor physical function in survivors as well as identifying the affected metabolic pathways may lead to improved therapies and long-term patient outcomes.

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