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1.
Value in Health ; 26(6 Supplement):S41, 2023.
Article in English | EMBASE | ID: covidwho-20243304

ABSTRACT

Objectives: The COVID-19 pandemic disrupted many facets of healthcare including patients delaying medical care for potentially life-threatening conditions. This study sought to compare specific key outcomes related to ischemic stroke that occurred before and during the COVID-19 pandemic. We assessed mortality rates, morbidity rates, and the administration of thrombolytics in patients with ischemic stroke admitted to emergency departments (ED) in the Stroke Belt, a region of the United States with historically worse stroke outcomes. Method(s): Cerner Real-World Data was used to identify patients residing in the Stroke Belt (Southeastern United States) who were admitted to the ED with ICD-10 codes indicating acute ischemic stroke. We determined in-hospital and 30-day mortality rates, morbidity rates (physical disability tracked 1-year post-ischemic stroke), and administration of thrombolytics for acute ischemic stroke patients before the COVID-19 pandemic (March 2019-February 2020) and during the pandemic (March 2020-February 2021). Result(s): In the defined period prior to COVID-19, 2,338 patients presented to the ED with ischemic strokes (49.5% male;mean age 64.8, SD:15.23;69.6% white). During COVID-19, 2,052 ischemic stroke patients presented to the ED (50.9% male;mean age 65.8, SD:15.04;71.5% white). Our analyses show a significant decrease in thrombolytic administration during the pandemic compared to before the pandemic (12.2% and 14.5%, respectively;p<0.05). There was no significant difference in rates of in-hospital mortality, 30-day mortality, or morbidity following ischemic strokes. Conclusion(s): The findings of our study suggest a reduction in ischemic stroke related ED encounters during the COVID-19 period, but no differences were observed in mortality and morbidity rates in ischemic stroke compared to before the pandemic. Future studies are required to determine if these trends were true in other regions of the United States, as well as to investigate other potential covariates linked to outcomes before and during the COVID-19 pandemic.Copyright © 2023

2.
Journal of the Intensive Care Society ; 24(1 Supplement):74-75, 2023.
Article in English | EMBASE | ID: covidwho-20239035

ABSTRACT

Introduction: InS:PIRE (Intensive Care Syndrome: Promoting Independence and REcovery) is a multidisciplinary programme whose role is to assist patients in the identification of, and subsequent rehabilitation from the sequelae of an admission to the Intensive Care Unit (ICU). In NHS Aryshire and Arran (NHSAA) InS:PIRE has traditionally consisted of in-person rehabilitation and support meetings to help manage common post-ICU issues. COVID-19 forced all InS:PIRE activities online, and has required services to redesign their delivery of supporting resources to be readily accessible remotely. Thus, the 'Life after ICU' app was created. Objective(s): The role of this application was to help better-provide accessible information to former ICU patients and their relatives, as well as, improve connectivity between medical professionals and patients. Method(s): The app platform was developed by Piota. Resources were chosen for inclusion through surveying InS:PIRE attendees, who identified their main areas of concern. These areas included: physical problems, emotional issues, social issues, family support, COVID specific support, and physiotherapy. The multidisciplinary InS:PIRE team co-ordinated the identification and collation of the appropriate resources. Additionally, the app serves as a platform for InS:PIRE to disseminate information about the on-going programmes as well as allowing attendees to contact the InS:PIRE team. Result(s): A trial version of the 'Life After ICU' app has now been launched. This app will allow patients and their families to readily access the resources they require. Following a trial period, feedback from app users will be collected and further adaptations made. Conclusion(s): Launching the app recognises the wider view of the importance of eHealth, and its role in modernising service-delivery. Indeed, the Scottish National Clinical Strategy recognises this as an area for future development. The efficacy of eHealth interventions for rehabilitation have been acknowledged,1-2 and thus translating them to the ICU context can be considered as a means of improving the holistic rehabilitation of this complex patient group. Furthermore, through providing services easily accessible by patients, this app allows InS:PIRE to realise NHSAA's 'Caring for Ayshire' strategy, whose aim is to provide care closer to home.

3.
Respirology ; 28(Supplement 2):234, 2023.
Article in English | EMBASE | ID: covidwho-2317850

ABSTRACT

Introduction/Aim: Medium and long-term impacts of COVID-19 pneumonitis are being increasingly recognised. Our study aimed to evaluate outcomes of hospitalised COVID-19 patients with moderate-to-severe respiratory compromise. Method(s): Patients admitted to a tertiary centre with COVID-19 pneumonitis (March 2020-October 2022) were followed in the Post-COVID Respiratory Clinic at 6-24 weeks. Baseline demographics, admission details, pulmonary function tests (PFTs), and clinic data were collected. Univariable and multivariable logistic regression were performed to investigate for predictors of persisting respiratory symptoms (dyspnoea, cough, chest pain) and functional limitation (self-reported). Result(s): 125 patients (64.8%male, 63.2+/-16.7years, 42.5% former/current smokers, BMI 31.0+/-8.0kg/m2, 49.6% fully vaccinated) with median follow-up time of 85 [interquartile range (IQR) 64-131] days were included. Pre-existing conditions included lung disease (29.6%), immunocompromise (15.2%), diabetes (24.8%) and hypertension (43.6%). 35.2% required ICU care (14.4% mechanical ventilated, 4% ECMO), 44.8% received high flow nasal prong oxygen and/or continuous positive airway pressure (CPAP). At initial clinic follow up, 65.4% had persisting X-ray changes. Mean predicted FEV1, FVC, DLCO were 86.8+/-20.7%, 85.3+/-20.3%, 82.2+/-19.8% respectively. Symptoms included dyspnoea (63.2%), fatigue (24.2%), cognitive dysfunction (12.9%) and musculoskeletal complaints (10.5%). Univariate predictors of continued respiratory and/or functional disability included age [odds ratio (OR) 1.03, 95%confidence interval (CI) 1.01-1.06, p = 0.01), prior lung disease (OR2.98, 95%CI 1.05-8.48, p = 0.04), hypertension OR2.61, 95%CI 1.09-6.22, p = 0.03) and length of hospital stay (LOHS) (OR1.03, 95%CI 1.00-1.07, p = 0.04). On multivariable analysis, only LOHS was independently predictive of continued respiratory and functional limitations (OR1.03, 95%CI 1.00-1.07, p = 0.02). Conclusion(s): Patients recovering from COVID-19 pneumonitis have a large burden of disability at follow-up. Older age, hypertension, lung disease and LOHS are risk factors for delayed recovery.

4.
Topics in Antiviral Medicine ; 31(2):386, 2023.
Article in English | EMBASE | ID: covidwho-2316987

ABSTRACT

Background: Nearly 26% of adults in the U.S. live with disability and are more likely to experience chronic health conditions, barriers to healthcare, and severe COVID-19 illness. Therefore, COVID-19 testing of adults living with disability is important to consider. The purpose of this study was to explore relationships between disability and COVID-19 testing, infection, and related challenges. Method(s): A Rapid Acceleration of Diagnostics-Underserved Population (RADx-UP) project in Miami, FL determined disability with a modified version of the Washington Group General Disability Measure. HIV serostatus and COVID-19 vaccination were confirmed with medical records. COVID-19 testing and infection history were self-reported. Statistical analyses included chi-squared tests and multiple binary logistic regression;variance inflation factors were calculated to ensure absence of collinearity. Result(s): A total of 1,689 RADx-UP participants with an average age of 55+/-12.3, 51% male, 49% Black non-Hispanic, 23% living with HIV (86% virally suppressed), and 76% received at least one dose of a COVID-19 vaccine. Nearly 40% were disabled, 37% reported employment disability, and 21% were functionally disabled (disability that interferes with performance of daily activities). Despite recruitment from the same sources, PLWH, compared to those without HIV, were more likely to be disabled (52% vs 36%;p< 0.0001), report employment disability (63% vs 30%;p< 0.0001), and report functional disability (29% vs 18%;p< 0.0001). Those with employment disability were less likely to have ever been tested for COVID-19 compared to those without (81% vs 85%;p=0.026). Employment disability was also associated with lower odds of having ever tested positive for COVID-19 after adjustment for demographics, health insurance, HIV, COVID-19 vaccination, smoking, and lung disease (aOR, 0.62;95% CI, 0.43-0.90;p=0.013). Disability was associated with greater odds of transportation challenges (aOR, 2.33;95% CI, 1.76-3.08;p< 0.0001), illicit drug use (aOR, 1.92;95% CI, 1.49-2.47;p< 0.0001), and smoking (aOR, 1.74;95% CI, 1.39-2.17;p< 0.0001). Compared to those without, those with transportation challenges (14% vs 40%;p< 0.0001) and illicit drug use (18% vs 30%;p=0.001) were more likely to postpone medical care. Conclusion(s): Lower COVID-19 testing rates may contribute to underestimated COVID-19 positivity rates in adults living with disability. Challenges with transportation and substance abuse contribute to less engagement in care.

5.
Clinical and Experimental Rheumatology ; 41(2):465, 2023.
Article in English | EMBASE | ID: covidwho-2306197

ABSTRACT

Background. Evaluation of physical function is fundamental in the management of idiopathic inflammatory myopathies (IIMs). Patient-Reported Outcome Measurement Information System (PROMIS) is a National Institute of Health initiative established in 2004 to develop patient-reported outcome measures with improved validity and efficacy. The present study aims to investigate the physical function status of IIM patients compared to those with non-IIM autoimmune diseases (AIDs) and healthy controls (HCs) utilizing PROMIS Physical Function (PF) data obtained in the coronavirus disease-2019 (COVID-19) Vaccination in Autoimmune Diseases (COVAD) study, a large-scale, international self-reported e-survey assessing the safety of COVID-19 vaccines in AID patients. Methods. The survey data regarding demographics, IIM and AID diagnosis, disease activity, fatigue and pain VAS, and PROMIS PF short form-10a were extracted from the COVAD study database. The disease activity (active vs inactive) of each patient was assessed in 3 different ways: (1) physician's assessment (active if there was increased immunosuppression), (2) patient's assessment (active vs inactive as per patient), and (3) current steroid use. These 3 definitions of disease activity were applied independently to each patient. PROMIS PF-10a scores were compared between each disease category (IIMs vs non-IIM AIDs vs HCs), stratified by disease activity based on the 3 definitions stated above, employing negative binomial regression model, and the predicted PROMIS PF-10a score adjusted for age, gender, and ethnicity was calculated. Factors affecting PROMIS PF-10a scores other than disease activity were identified by multivariable regression analysis in the patients with inactive disease (IIMs or non-IIM AIDs). The association between fatigue or pain VAS and PROMIS PF-10a scores was also assessed. Results. 1057 IIM patients, 3635 non-IIM AID patients, and 3981 HCs responded to the COVAD survey until August 2021. The median age of the respondents was 43 [IQR 30-56] years old, and 74.8% were female. Among IIM patients, dermatomyositis was the most prevalent diagnosis (34.8%), followed by inclusion body myositis (IBM) (23.6%), polymyositis (PM) (16.2%), anti-synthetase syndrome (11.8%), overlap myositis (7.9%), and immune-mediated necrotizing myopathy (IMNM) (4.6%). The predicted mean of PROMIS PF-10a scores was significantly lower in IIMs compared to non-IIM AIDs or HCs (36.3 [95% (CI) 35.5-37.1] vs 41.3 [95% CI 40.2-42.5] vs 46.2 [95% CI 45.8-46.6], p<0.001), irrespective of disease activity (Figure 1). The results were consistent across analyses using different disease activity definitions (physician's assessment, patient's assessment, and steroid use), while the largest difference between active IIMs and non-IIM AIDs was observed when the disease activity was defined by patient's assessment (35.0 [95% CI 34.1-35.9] vs 40.1 [95% CI 38.7-41.5]). Considering the subgroups of IIMs, the scores were significantly lower in IBM in comparison with non-IBM IIMs (p<0.001). The independent factors associated with low PROMIS PF-10a scores in the patients with inactive disease were older age, female gender, and the disease category being IBM, PM, or IMNM. Higher fatigue or pain VAS was associated with lower PROMIS PF-10a scores in each disease category (p<0.001), while the scores were still lower in IIMs compared to non-IIM AIDs even after being adjusted for fatigue and pain. Conclusion. Physical function is significantly impaired in IIMs compared to non-IIM AIDs or HCs, even in patients with inactive disease. The elderly, women, and IBM groups are the worst affected, suggesting that developing targeted strategies to minimize functional disability in certain groups may improve patient-reported physical function and disease outcomes.

6.
The Coronavirus Crisis and Challenges to Social Development: Global Perspectives ; : 77-85, 2022.
Article in English | Scopus | ID: covidwho-2300038

ABSTRACT

There is evidence that persons with disabilities (PWDs) continue to encounter barriers globally;such barriers impede their participation and inclusion in society. In developing countries such as Ghana, the effects of the barriers could be profound because of attitudes that are deeply rooted in Ghanaian sociocultural beliefs and practices. Although these attitudes marginalize persons with disabilities, stigma, and discrimination against persons with disabilities, have a further impact on familial support systems. The COVID-19 pandemic has exacerbated the weak familial support systems for persons with disabilities. Lockdowns, social distancing, physical distancing, hygiene, and health practices are among the safety measures taken against the impact of this pandemic, which affects individuals, families, and communities. Unfortunately, the government of Ghana's COVID-19 response strategy adopted by several community organizations are not disability inclusive. The chapter explores the challenges faced by persons with physical and psychosocial disabilities within Ghanaian society in the context of the COVID-19 pandemic. Specifically, we explore the risk factors and how they impact persons with disabilities. We seek to learn more about which groups of persons with disabilities are more vulnerable, the coping strategies adopted by persons with disabilities, and the measures that the government could adopt to better address the needs of persons with disabilities. © The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2022.

7.
Ethics, Medicine and Public Health ; 23, 2022.
Article in English | Scopus | ID: covidwho-2284585
8.
The Lancet Healthy Longevity ; 2(6):e301, 2021.
Article in English | EMBASE | ID: covidwho-2283918
9.
JMIR Aging ; 6: e41692, 2023 Mar 29.
Article in English | MEDLINE | ID: covidwho-2257606

ABSTRACT

BACKGROUND: The COVID-19 pandemic increased the importance of technology for all Americans, including older adults. Although a few studies have indicated that older adults might have increased their technology use during the COVID-19 pandemic, further research is needed to confirm these findings, especially among different populations, and using validated surveys. In particular, research on changes in technology use among previously hospitalized community-dwelling older adults, especially those with physical disability, is needed because older adults with multimorbidity and hospital associated deconditioning were a population greatly impacted by COVID-19 and related distancing measures. Obtaining knowledge regarding previously hospitalized older adults' technology use, before and during the pandemic, could inform the appropriateness of technology-based interventions for vulnerable older adults. OBJECTIVE: In this paper, we 1) described changes in older adult technology-based communication, technology-based phone use, and technology-based gaming during the COVID-19 pandemic, compared to before the COVID-19 pandemic and 2) tested whether technology use moderated the association between changes in in-person visits and well-being, controlling for covariates. METHODS: Between December 2020 and January 2021 we conducted a telephone-based objective survey with 60 previously hospitalized older New Yorkers with physical disability. We measured technology-based communication through three questions pulled from the National Health and Aging Trends Study COVID-19 Questionnaire. We measured technology-based smart phone use and technology-based video gaming through the Media Technology Usage and Attitudes Scale. We used paired t tests and interaction models to analyze survey data. RESULTS: This sample of previously hospitalized older adults with physical disability consisted of 60 participants, 63.3% of whom identified as female, 50.0% of whom identified as White, and 63.8% of whom reported an annual income of $25,000 or less. This sample had not had physical contact (such as friendly hug or kiss) for a median of 60 days and had not left their home for a median of 2 days. The majority of older adults from this study reported using the internet, owning smart phones, and nearly half learned a new technology during the pandemic. During the pandemic, this sample of older adults significantly increased their technology-based communication (mean difference=.74, P=.003), smart phone use (mean difference=2.9, P=.016), and technology-based gaming (mean difference=.52, P=.030). However, this technology use during the pandemic did not moderate the association between changes in in-person visits and well-being, controlling for covariates. CONCLUSIONS: These study findings suggest that previously hospitalized older adults with physical disability are open to using or learning technology, but that technology use might not be able to replace in-person social interactions. Future research might explore the specific components of in-person visits that are missing in virtual interactions, and if they could be replicated in the virtual environment, or through other means.

10.
Practical Diabetes ; 40(1):19-24a, 2023.
Article in English | EMBASE | ID: covidwho-2242159

ABSTRACT

Inequalities in health care exist in many countries in the world. In 2008 the then UK Secretary of State for Health commissioned the Marmot review, ‘Fair Society, Healthy Lives', to propose strategies to address health inequalities in the UK. Most of Marmot's proposals were not acted upon and in 2020, 10 years after the initial recommendations were published, Marmot found that there had been no improvement and some things were worse. In diabetes care inequalities are widespread, impacting on prevention, treatment, access to technology, screening for complications, risk of complications, morbidity and mortality. Ethnicity is a major risk factor, starkly demonstrated by the increased COVID-19 related mortality in people from minority ethnic groups with diabetes. Disadvantaged groups include, but are not limited to, those with social deprivation, intellectual and physical disabilities and severe mental illness. The decision to shelve the long-awaited white paper on tackling health inequalities, taken recently by the last Secretary of State for Health amid protests from a coalition of medical organisations, makes it unlikely that the government will take the actions proposed by Marmot. In the absence of a national strategy, responsibility to recognise and address inequalities in diabetes care falls on health care professionals, in teams and as individuals. Copyright © 2023 John Wiley & Sons.

11.
Medical Journal of Dr DY Patil Vidyapeeth ; 15(8):154-162, 2022.
Article in English | Scopus | ID: covidwho-2202107

ABSTRACT

Knowing that coronavirus disease 2019 (COVID-19) pandemic and the resultant lockdowns severely curtailed the mobility and accessibility to healthcare services for people with disability (PWD);the objective was to explore the impact and challenges faced by different disabling conditions among PWDs. A systematic review was conducted using online databases on impact or effect of COVID-19 on people with disabilities. Forty-three articles were included. Studies on different disability conditions reported reduced access to healthcare and rehabilitative services due to lockdown during the pandemic. There was reduction in physical activity;increased behavioral problems;poor compliance to preventive measures;and they experience anxiety, fear, depression, stress, loneliness, social isolation, and financial crisis. Their families and caregivers also experienced adverse emotional, economic, and social consequences of the pandemic. The study highlights need for mass sensitization, mobilization of services and creating awareness for adaptation and implementation of comprehensive disability inclusive guidelines. © 2022 Medical Journal of Dr. D.Y. Patil Vidyapeeth ;Published by Wolters Kluwer - Medknow.

12.
Chest ; 162(4):A941-A942, 2022.
Article in English | EMBASE | ID: covidwho-2060735

ABSTRACT

SESSION TITLE: Critical Thinking SESSION TYPE: Case Reports PRESENTED ON: 10/19/2022 09:15 am - 10:15 am INTRODUCTION: Compressive therapies to improve respiratory mechanics, such as abdominal compression, have been described in literature in patients with COVID-19 induced acute respiratory distress syndrome (COVID-19 ARDS) 1–3. These compressive therapies minimize the risk of barotrauma by equal distribution of pressure across the alveoli. Hence, they help with lung protective ventilation. This phenomenon of paradoxical improvement in respiratory compliance with increase in intraabdominal pressure (IAP) has not been described in ILD population. We describe a case of end-stage fibrotic ILD, secondary to hypersensitivity pneumonitis (HP), exhibiting a paradoxical improvement in respiratory compliance with sustained abdominal compression. CASE PRESENTATION: 56-year-old female with history of NASH-related cirrhosis was transferred to our hospital for expedited work-up of lung transplant due to rapid progression of biopsy-proven steroid-unresponsive fibrotic HP. Due to worsening hypoxic respiratory failure, she was intubated on arrival to our hospital. Following intubation, she was sedated and paralyzed and was found to have high peak and plateau pressures in supine and reverse Trendelenburg positions. However, on application of abdominal pressure, her peak and plateau pressure showed a dramatic reduction in absolute values. This reduction was sustained during the entire duration of the maneuver. Overall, it reduced driving pressures and improved the static compliance of the respiratory system. We subsequently applied abdominal binder (table 1) and found a similar decrease in pressures (see images). Unfortunately, due to functional disability, patient was not deemed a candidate for lung and liver transplant and was transitioned to comfort measures. DISCUSSION: Paradoxical improvement in respiratory compliance has been demonstrated in late-stage COVID ARDS1,2. The mechanism behind this is unclear. In theory, increase in IAP increases intrapleural pressures, reduces end-expiratory volume and overdistention of aerated lung1,2. We hypothesize that patients with end-stage ILD behave similarly to patients with COVID-ARDS. However, this is purely exploratory as our observations are limited by lack of intrapleural measurements. Use of abdominal compression is a simple maneuver, which can be performed at the bedside to assess for the paradoxical phenomenon. Even though we postulate that long-term abdominal compression is well tolerated, we do not know the effects of sustained long-term abdominal compression on gas-exchange and chest wall dynamics. CONCLUSIONS: Patients with end-stage fibrotic lung disease, exhibiting high-driving pressures on mechanical ventilator in supine and reverse Trendelenburg positions, can be screened for reduction in peak and plateau pressures with abdominal compression. Use of this maneuver may help in lung-protective ventilation and minimize ventilator-induced lung injury. Reference #1: Elmufdi FS, Marini JJ. Dorsal Push and Abdominal Binding Improve Respiratory Compliance and Driving Pressure in Proned Coronavirus Disease 2019 Acute Respiratory Distress Syndrome. Crit Care Explor. 2021;3(11):e0593. doi:10.1097/cce.0000000000000593 Reference #2: Julia Cristina Coronado. Paradoxically Improved Respiratory Compliance With Abdominal Compression in COVID-19 ARDS. Is COVID-19 a risk factor Sev preeclampsia? Hosp Exp a Dev. 2020;(January):2020-2022. Reference #3: Stavi D, Goffi A, Shalabi M Al, et al. The Pressure Paradox: Abdominal Compression to Detect Lung Hyperinflation in COVID-19 Acute Respiratory Distress Syndrome. Am J Respir Crit Care Med. 2022;205(2):245-247. doi:10.1164/rccm.202104-1062IM DISCLOSURES: No relevant relationships by Abhishek Bhardwaj No relevant relationships by Brandon Francis no disclosure on file for Marina Freiberg;No relevant relationships by Simon Mucha No relevant relationships by Arsal Tharwani

13.
Journal of Pediatric Gastroenterology and Nutrition ; 75(Supplement 1):S322-S323, 2022.
Article in English | EMBASE | ID: covidwho-2058635

ABSTRACT

Given the increase in the provision of telehealth services during the COVID-19 pandemic, it is important for medical and psychology providers to promote evidence-based treatments that can also demonstrate clinical utility through telehealth (1). This proof-of-concept study provides preliminary support for the clinical utility of the Williams and Zahka Cognitive Behavioral Therapy (CBT, 2) approach in reducing functional impairment and pain for pediatric patients with a Disorder of Gut-Brain Interaction (DGBI) when delivered through telehealth. A retrospective chart review was completed to examine psychological treatment duration and response among pediatric patients with DGBIs including functional abdominal pain and irritable bowel syndrome. CBT was delivered via telehealth with a licensed psychologist or supervised psychology trainee embedded in a pediatric gastroenterology clinic. Participants were 24 youth who completed initial evaluations between February and July of 2021 during the COVID-19 pandemic. Demographics, treatment characteristics, and statistical analyses are presented in Tables 1 and 2 (3,4). The Williams and Zahka CBT (2) approach utilizes a biopsychosocial framework that includes an initial focus on psychoeducation and function. Consistent with study hypotheses, non-parametric statistical analyses demonstrated statistically significant reductions in functional disability and pain with large effect sizes following treatment via telehealth. On average, patients attended approximately five sessions, including one initial evaluation and four treatment sessions, and this was not substantially different depending upon initial severity of impairment. These findings are in line with average treatment duration reported as 3 to 5 sessions in prior studies (5,6). Given the average length of treatment, patient care involved predominately psychoeducation on somatic symptoms and DGBIs along with a strong focus on functional restoration through behavioral activation, including a daily schedule and gradual return to routines and meaningful activities independent of school term status. Findings are similar to prior studies reporting reductions in functional impairment and pain following evidence-based treatment through a biopsychosocial framework for pediatric patients with DGBIs delivered in-person (5). (Table Presented).

14.
Journal of Pediatric Gastroenterology and Nutrition ; 75(Supplement 1):S117-S118, 2022.
Article in English | EMBASE | ID: covidwho-2057997

ABSTRACT

Purpose: The COVID-19 pandemic has the potential to influence the well-being of families and children with Functional Abdominal Pain Disorders (FAPDs). Given the known relationship between stress and abdominal pain in children with FAPDs, we hypothesized pandemic-related changes (e.g., reductions in family finances, social interactions) could affect health outcomes. Our aim was to examine the potential impact of the pandemic on abdominal pain, quality of life, psychological and physiological symptoms, and functional disability in children with FAPDs. Method(s): Ninety-one parents of children ages 7-12 who met the Rome IV criteria for a FAPD completed baseline questionnaires as part of an ongoing randomized controlled intervention trial on their child's Quality of life (PedsQL), Pain Behavior and Response (PBQ, PBCL, PRI), Pain Catastrophizing (PCS), Psychological Symptoms (SCL-90), Functional Disability (FDI), and sleep habits (CSHQ). Heart rate was also measured. Participants were categorized into two groups, based on the date of entry into the original study, as before or during the COVID-19 pandemic, allowing us to take advantage of a naturally occurring opportunity to assess potential impacts of the pandemic. Result(s): Sixty-one participants were consented before, and 30 participants were consented during the COVID-19 pandemic. Parents in the latter group reported their children to have more days of abdominal pain, higher pain frequency, pain behavior, disability, helplessness, and depression, and significantly lower quality of life, compared to the before COVID group (Table 1). Finally, child sleep anxiety and overall sleep difficulty were significantly higher during COVID. Children also had a significantly higher mean heart rate during the COVID-19 pandemic. Conclusion(s): Our findings suggest that the COVID-19 pandemic has impacted children with FAPDs in multiple domains. Of concern, parents of children with FAPDs reported greater child pain frequency, disability, and pain behaviors during the pandemic than before the pandemic. Parents also reported significant increased child emotional distress during the COVID-19 pandemic and impacts on quality of life during COVID-19;in fact, most scores on the PedsQL were lower than those previously reported for children receiving cancer treatment. Child sleep anxiety and overall disordered sleep also worsened during the pandemic. Additionally, physiological changes (mean heart rate) were observed during the pandemic (Figure 1). Possible explanations for these findings could include increases in child and family stress, and greater parental awareness of child symptoms due to increased time at home together, or parents' own increased stress levels. Clinicians and researchers should be aware of the potential impact of COVID-19 pandemic on these areas to inform research as well as treatment of children with FAPDs.

15.
Journal of Pediatric Gastroenterology and Nutrition ; 75(Supplement 1):S454-S455, 2022.
Article in English | EMBASE | ID: covidwho-2057565

ABSTRACT

Background: Patients with Disorders of Gut-Brain Interaction (DGBI) respond best to multidisciplinary treatment. With the emergence of the Coronavirus disease 2019 (COVID-19) pandemic in 2020 and the implemented lockdown in large areas of the United States, the multidisciplinary functional abdominal pain program (FAPP) at Boston Children's Hospital for the first time switched to providing care via telemedicine. We aimed to evaluate patient satisfaction and outcomes of patients seen in a multidisciplinary telemedicine visit compared to in-person care at the time of initial evaluation and follow-up. Method(s): Prospective study in which families were given a questionnaire to evaluate the visit and treatment (satisfaction, improvement overall, of abdominal pain (Abdominal Pain Index, API) and of daily functioning (Functional Disability Index, FDI) since initial visit in the FAPP. Patients <= 18 years seen for an initial visit in the FAPP between 4/1/20 and 6/20/21 were recruited. Multidisciplinary evaluation was performed in-person or via zoom (Gastroenterology, Pain medicine, Psychology, Social services, Dietician). Initially all visits were done via telemedicine (4/1/20-7/1/2020) due to the temporary closure of outpatient clinics. Thereafter, in-person visits restarted but telemedicine visits were continued to be offered. Result(s): Patient population: 41 patients completed the study. Two groups were defined based on initial visit type: Group A (Gr-A = Telemedicine, n=26) and group B (Gr-B = in-person, n=15). For Gr-A, follow-up visits were via telemedicine (n=17), in-person (n=2) and 7 patients had no follow-up. For Gr-B, the follow-up visits were via telemedicine (n=9), in-person (n=4) and 2 patients had no follow up visit. Mean age of participants was 14.5+/-2.8 years with female predominance (73.2%). No significant difference was found in age, gender, race, DGBI diagnosis, presence of extra-intestinal symptoms, number of follow-up visits, baseline API or FDI between groups. Patient satisfaction with multidisciplinary care at initial visit (Figure 1): No significant differences were detected between Gr-A and Gr-B (p>0.05). Patient visit type preference: Families preferred in-person visits (73%) for the first visit, but telemedicine (46%) or no preference (47%) for follow-up visits. When asked if patients were equally satisfied with telemedicine and in-person visits, 81.9% agreed, 9.1% were undecided and 9.1% disagreed. 81.9% were not worried about somethinig being missed during the telemedicine visit, while18.2% were undecided about this. When asked if patients felt telemedicine was more efficient than in-person visits, 54.6% agreed, 27.3% were undecided and 45.5% disagreed. 90.9% of patients agreed that telemedicine visits were more convenient, where 9.1% were undecided. Patient outcomes: There was no clinically significant improvement of the API score in either group (Gr-A: 2.7+/-0.8 to 2.4+/-1.1, p=0.04;Gr-B: 2.6+/-0.9 to 2.4+/-1.0, p=0.5) or FDI (Gr-A: 13.4+/-11.2 to 13.9+/-10.5,p=0.8, Gr-B: 15.4+/-10.7 to 14.3+/-8.0, p=0.8) between the initial and follow-up visit. When asked how patients felt subjectively at the time of study, there was improvement but no difference between groups: Much better (Gr-A: 52.6% vs Gr-B: 84.6%), Better (Gr-A: 47.4% vs Gr-B: 15.4% ), no patients in either group reported feeling worse (p=0.07). Subjective improvement of functioning was reported in Gr-A: 58.5% fair to excellent, 29.4% poor and 11.8% none, whereas in Gr-B 58.3% felt fair to excellent improvement of functioning and 41.7% continued to function poorly (p=0.4). Conclusion(s): Patients are equally satisfied with delivery of multidisciplinary care for pediatric DGBI via telemedicine and in-person, suggesting this may be a promising route for expanding delivery of care even in the post-pandemic era. Limitations of this study are the small sample size. Further the lock-down promoted lack of functioning and measures of disability such as the FDI may not be representative.

16.
Journal of Neuromuscular Diseases ; 9:S265-S266, 2022.
Article in English | EMBASE | ID: covidwho-2043384

ABSTRACT

Introduction: Myotonic dystrophy type 1 (DM1) is related to muscle weakness, impaired balance, and a high risk of falls resulting in decreased quality of life and social participation. Indeed, DM1 is considered as a model of premature aging. However, the Covid-19 pandemic has exacerbated these health problems by decreasing the access to rehabilitation services and significantly decrease volunteer total weekly physical activity (PA) level. A pragmatic tool: PACE (Promoting Autonomy through exer-CisE), which has been developed to allow safe and adapted physical activity (APA) practice in older adults at home, could be a solution to counter physical deficiencies and lockdown restrictions in DM1 population. Objectives: 1. To adapt the PACE tool (decisional tree related to 35 APA programs) for the DM1 population (Pace-DM1 tool);2. To evaluate if assessing functional and muscular capacity in remote mode is feasible and valid in the DM1 population compared to in person modality;3. To evaluate the acceptability, feasibility and usability of implementing the PACE-DM1 tool for the health professionals and the patients. Methods: O-1: Two patient-partners, 3 participants who will experience the PACE-DM1 APA program, 2 health professionals from the Neuromuscular Disease Clinic of Jonquière (NMC), 1 NMC manager and 3 researchers were recruited to adapt the PACE tools using a co-creation design. O-2: Participants are assessing functional and muscular capacity [Time Up and Go, 30sec. chair stand test, 5 reps of sit-to-stand, 4-meter gait speed, balance and functional reach test] per and post-intervention (12 weeks) in remote (zoom) and in-person methods. O-3: After co-creation meetings, health professional were asked to evaluate the acceptability (satisfaction assessed via Likert scales;semi-opened questions), usability (System Usability Scale questionnaire) and feasibility (adherence, recruitment rate, etc.) of the PACE-DM1 tool. Results: First, co-creation meetings allowed us to adapt PACE tool (e.g. decisional tree cut points) for DM1 participants. Health professionals found PACE-DM1 tool exercises safe and adapted to the physical deficiencies of the DM1 population. Our preliminary data (n=2) using the adapted decisional tree showed similar results between inperson and remote assessment. More precisely, both assessment modality identified the same physical deficiencies (lower limb cardio-muscular, trunk mobility and stability, and balance) and prescribed the same program difficulty (out of a possible 5 levels). In the pre-intervention phase, implementing the PACE-DM1 tool was considered acceptable, usable and feasible for health professionals. Conclusion: Preliminary results demonstrate that an APA pragmatic, easy-to-use and adapted tool is implementable to prevent care trajectory of people with DM1. Nevertheless, these promising results need to be confirmed and validated with a larger sample.

17.
Journal of the Intensive Care Society ; 23(1):46-47, 2022.
Article in English | EMBASE | ID: covidwho-2042961

ABSTRACT

Introduction: Mental, physical, and cognitive impairments are common after an intensive care unit (ICU) stay. It remains unknown to what extent the extraordinary increase in bed occupancy during the pandemic could be linked to the severity and frequency of patient's impairments. Objective: To determine the frequency, severity, and risk factors for mental, physical, and cognitive impairments at ICU discharge during high and low bed occupancy periods. Methods: Prospective cohort study in seven Chilean ICUs (ClinicalTrials.gov Identifier: NCT04979897). We included adults, mechanically ventilated >48 hours in the ICU who could walk independently prior to admission. Trained physiotherapists assessed the Medical Research Council Sum-Score (MRC-SS), Montreal Cognitive Assessment (MOCA-blind), Hospital Anxiety and Depression Scale (HADS), Impact of Event Scale-Revised (IES-R), and the World Health Organization Disability Assessment Schedule (WHODAS 2.0) at ICU discharge. Pre-admission employment status, educational level, and Clinical Frailty Scale (CFS) were also collected. We compared periods of low and high bed-occupancy, defined as less or more than 90% of staffed ICU beds occupied. We used t-test for normally distributed, Mann-Whitney for those not normally distributed, and chi-square for categorical variables. We explored risk factors for mental, physical, and cognitive impairments using logistic regression adjusted for age, sex, educational level, and bed occupancy. Analyses were performed in Stata/SE 16.0. Results: We included 192 patients with COVID-19 of which 126 [66%] were admitted during a high bedoccupancy period (January to April 2021). Majority were male (137 [71%]) and worked full-time (127 [66%]). Median [P25-P75] age was 57 [47-67], length of ICU stay was 15[ 11-27] days, and duration of mechanical ventilation (MV) was 9 [6-16.5] days. Seven (4%) patients were clinically frail, 65 (34%) had ICUacquired weakness (ICU-AW), 134(70%) had cognitive impairment, 122 (64%) had post-traumatic stress symptoms (PTSS), 53 (28%) had depressive symptoms, 106 (55%) had anxiety symptoms, and 148 (77%) had severe disability. Table 1 shows the combined prevalence of physical and mental health problems. Patients admitted during the high-occupancy period were younger (mean 54, 95% confidence interval [47, 61] vs 61 [58, 64]), more likely to have a higher education qualification(HEQ) (OR 1.67 [0.9, 3.06]), and had a shorter duration of MV (8 [6-13] vs 13 [8-34];p<0.001) and ICU stay (13 [10-19] vs 21.5 [13-42];p<0.001). Mental, physical, and cognitive impairments were similar in low and high occupancy periods. Patients with a HEQ were less likely to have ICU-AW (OR 0.23 [0.11, 0.46]), cognitive impairments (OR 0.26 [0.11, 0.6]), symptoms of depression (OR 0.45 [0.22, 0.9]) or anxiety (OR 0.26 [0.13, 0.5]), and severe disability (OR 0.4 [0.18, 0.94]). Females were more likely to have ICU-AW (OR 2.4 [1.13, 4.93]). Older patients were less likely to suffer PTSS (OR 0.97 [0.94, 0.99] per year old). Conclusions: Majority of patients had at least one mental, physical or cognitive impairment being similar by bed occupancy. Having a higher education qualification was the main protective factor for impairments at ICU discharge. Preventative treatments programmes should target patients with <12 years of education.

18.
19th International Conference on Ubiquitous Robots, UR 2022 ; : 243-247, 2022.
Article in English | Scopus | ID: covidwho-2019017

ABSTRACT

With the COVID-19 outbreak, people with disabilities have faced difficulties in managing their health owing to restrictions on medical access and use. Therefore, this study aimed to develop an Internet of Things-based health information-sharing mobile app for the disabled and their caregivers and evaluate its usability in maintaining access to health care services. As a first step, 19 user needs were evaluated through the Daily Health app 1.0, developed for the disabled by the National Rehabilitation Center. Based on these needs, the study participants proceeded with mind maps and personas to derive the User Interface. Subsequently, the Daily Health 2.0 program was designed, and heuristic and usability evaluations were conducted by experts. The Daily Health app 2.0 beta version was developed by modifying the detailed functions and design of the app based on the results of experts' opinions. Finally, a usability evaluation was conducted for app users. The app developed in this study will contribute to the efficient health management of people with disabilities in non-face-to-face situations. When combined with robot technology, it is expected that more effective health management will be possible by replacing physical functions that are difficult for people with disabilities. © 2022 IEEE.

19.
Annals of the Rheumatic Diseases ; 81:1651, 2022.
Article in English | EMBASE | ID: covidwho-2009061

ABSTRACT

Background: Complex regional pain syndrome type-1 (CRPS-1) is a severely disabling pain syndrome characterized by sensory and vasomotor disturbance, swelling, and functional impairment. Persistence of signs and symptoms has been observed in up to 64% of cases until 5.8 yrs after the onset of manifestations. Long-term disability, such as irreversible functional limitation, has been reported in up to 28% of cases with severe consequences on workability. No scores are validated to evaluate residual disability. Bisphosphonates have the best efficacy profile, compared with other therapeutic approaches, but data on long-term effectiveness are lacking. Objectives: To retrospectively evaluate long-term residual disability in patients with CRPS-1 of hand or foot after treatment with IV Neridronate (IVNer). To identify predictors of residual disability. To quantify disease outcomes, such as patient's subjective perception and residual pain. To assess long-term safety profile. Methods: We retrospectively collected data of patients affected by CRPS-1, treated with IVNer, referred to a tertiary Rheumatology Centre between Feb 2013 and Dec 2020. Visual analogue scale (VAS) and McGill Questionnaire (McGQ) were used for pain assessment. Disabilities of the Arm, Shoulder and Hand (DASH) and American Orthopaedic Foot and Ankle Society's (AOFAS) ankle-hindfoot scale for hand and foot involvement, respectively, were administered to explore disability through a phone survey. This kind of investigation was preferred for Covid pandemic. Results: 106 patients with definite diagnosis of CRPS-1 were included, mean age±standard deviation 55.6±13 yrs, 67% females, mean follow up duration 56.3 months (range 14-94), 46.2% with hand involvement. The mean VAS score before treatment onset was 55.8±23.4mm, while the McGQ was 12.9±6.7 in the sensory domain, 4.9±3.3 in the affective domain and 17.8±9.2 on the total score. Based on the patient's subjective perception and the proposed semi-quantitative scale, 77.4% described themselves as fully recovered (FR), 15% partially recovered (PR), and 7.6% with persistent disease (PD). Comparison between baseline and follow-up VAS shows a significant reduction (55.8±23.4 vs 15.1±26.4, p<0.00001). Pain assessment by McGQ showed a significant improvement in global score (baseline vs follow-up 17.8±9.2 vs 3.9±7.8, p<0.00001), sensory (12.9±6.7 vs 2.7±5.7, p<0.00001) and affective (4.9±3.3 vs 1.2±2.3, p<0.00001) domains. According to DASH score, 79.2% of the patients were FR, 3.8% had some difficulties, but with overall preserved use of the upper limb, and 17.0% had permanent functional disability. According to AOFAS ankle-hindfoot scale 76.4% of patients were FR, 16.0% had partial recovery, and 7.6% had severe functional impairment. Percentages of DASH and AOFAS scores showed a complete accordance with patients' subjective perception (Figure 1a and b). The only predictor of long-term functional impairment for CRPS-1 in the hand was a delayed treatment compared to symptoms onset (p=0.02). No predictors were found for foot localization. No patients reported the occurrence of osteonecrosis of the jaw or atraumatic fractures/atypical fracture features. Conclusion: IVNer maintained a good long-term effectiveness and safety profile in the treatment of CRPS-1. The effectiveness of IVNer is maintained on both pain symptoms and function, in terms of reductions in the VAS, McGQ and in hand and foot disability scores.

20.
Annals of the Rheumatic Diseases ; 81:1096, 2022.
Article in English | EMBASE | ID: covidwho-2008960

ABSTRACT

Background: Fatigue in SLE has a multifactorial origin and disease activity seems to contribute only minimally to its genesis. Therefore, non-pharmacological therapeutic strategies should also be considered in the management of fatigue. There is some evidence on the effectiveness of aerobic exercise programs in improving fatigue, without a negative impact on disease manifestations. Objectives: the aim of this study was to analyze fatigue and Health Related Quality of Life (HRQoL) in a monocentric cohort of patients with SLE, in a condition of stable remission or low disease activity, before and after a program of physical exercise, through the administration of validated Patient Reported Outcomes (PROs). Methods: this is a cross-sectional interventional study which included patients with SLE, aged between 18 and 55 years, in a condition of stable (≥12 months) remission (DORIS)1 or low disease activity (LLDAS)2. Patients enrolled had a FACIT score ≤40 in the previous 6 months. Patients with other possible causes of fatigue (e.g.: anemia, hypothyroidism, severe vitamin D defciency), active arthritis or physical disabilities were excluded. For each patient, demographics, comorbidities, treatment, clinical and laboratory data were collected. Disease activity was evaluated with the SELENA-SLEDAI and organ damage with the SLICC/DI. Each patient completed the following PROs before and after the interventional program: SF-36, FACIT-Fatigue, LIT, HADS. Due to the limitations related to the COVID-19 pandemic, the physical exercise sessions were carried out using the Google Meet digital platform. Patients were asked to participate to at least 70% of the lessons. The physical exercise program included moderate intensity aerobic exercises (muscle strengthening, joint mobility, breathing, static and dynamic stretching, balance and neuro-dynamics);workouts were performed 3 times a week, consisting of 60 minutes each. The program lasted for 12 weeks. Results: we enrolled 12 female patients, regularly followed at the Rheumatology Unit of Pisa;only 9 of them completed the study (mean age 38.56 ± 9.1 years;median disease duration 7 years (IQR 5,25-9,75)). 8/9 were in stable remission, while 1/9 was in LLDAS for the presence of leukopenia. 2/9 patients presented organ damage, one for cataract and one for renal insufficiency, while none presented damage in the musculoskeletal system. 33.3% of patients had fbromyalgia. 88.8% was on treatment with Hydroxy-chloroquine, 55.5% was on low dose steroids (2±1.9 mg/daily), 33.3% was on Mycophenolate Mofetil;only 1 patient was on Belimumab. All PROs showed a trend to improvement at the end of the 12-week program of physical activity (Table 1). We demonstrated a statistically signifcant improvement of: FACIT, LIT, depression score of the HADS and MCS of the SF-36. The items of role physical (RP), vitality (VT) and mental health (MH) of the SF-36 also showed a signifcant improvement. Conclusion: In a small cohort of SLE patients in remission but with severe fatigue, in the difficult context of COVID-19 pandemic, we demonstrated that an online program of physical exercise may determine a signifcant improvement of fatigue, perception of disease burden and mental health. In the context of a multidisciplinary management, fnding effective intervention programs to improve fatigue and HRQoL in SLE patients appears of utmost importance, with the fnal aim of improving patients' health status.

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