International Nursing Actions to Reduce Health Inequities Faced by People with Intellectual andDevelopmental Disability

The impact of the COVID-19 pandemic highlighted health inequities for people with intellectual and developmental disability (PWIDD). It was alsothe stimulus for an international group of nurse researchers with shared expertise and experience to create a Global IDD Nursing Collaboratory. Acollaboratory is a networked environment or "center without walls” where interaction oriented to common research areas occur without regard tophysical location. The overarching goal of this Global Nursing Collaboratory is to assure the highest quality of life for PWIDD across the lifespan.Applying their unique skills and expertise, nurses working across health and social contexts are often the bridge over the healthcare gapsencountered by PWIDD. This paper describes the potential practice, education, and research contributions nurses can make to reduce healthinequities experienced by PWIDD. We will examine how we talk about disability, the impact of the current COVID 19 crisis, and our educationalsystems which in some countries leave nurses and other health professionals ill prepared to meet the unique needs of this population We willdescribe the context, access issues, and health service organizations for and with PWIDD across countries to equip nurses with basic knowledge ofhealth care for PWIDD and energize meaningful improvement in delivery of this care. Importantly, we offer action steps for all nurses towardreducing stigma and health inequities related to living with an intellectual and developmental disability (IDD). © 2022,Online Journal of Issues in Nursing. All Rights Reserved.

Evidence-based implementation of our “Structured urinary Continence Assessment and Management Plan” practice change package to improve continence assessment, diagnosis and management on wards admitting patients post-stroke

Background: Urinary continence assessment and management plans are recommended in stroke clinical guidelines, however this care is often not provided. Aim: To determine the proportion of hospitalised patients with continence symptoms who have an assessment, diagnosis and management plan, before, and following the implementation of a practice change intervention. Methods: Fifteen wards (acute=3, rehabilitation=7, acute and rehabilitation= 5), that admit adult patients with stroke at 12 hospitals (metropolitan= 4, regional=8) participated. We implemented our evidence-based Structured urinary Continence Assessment and Management Plan (SCAMP) intervention (clinical decision tool, practice guidelines, webbased clinician education modules) using implementation strategies to overcome identified barriers. Screening and auditing of consecutive medical record for three 3-month periods were undertaken: before implementation (T0);after the 6-month implementation period (T1), and after a 6-month maintenance period (T2). The records of symptomatic inpatients were audited in detail. Descriptive statistics for The proportions of eligible symptomatic inpatients receiving continence assessment, diagnosis and management plans are presented. Results: All wards contributed data at T0, and 11/15 wards at T1 and T2. The onset of COVID19 prevented implementation at two rural wards, and two metropolitan wards closed immediately after implementation was completed. The proportion of symptomatic inpatients relative to all screened was: T0= 33% (283/849), T1= 33% (239/723), T2= 36% (247/695). The characteristics of symptomatic inpatients included: age(years) mean(SD) T0= 79(13), T1= 76(15), T2= 76(14);females T0= 57%(161/283);T1= 55%(132/239);T2= 58%(143/247). The proportions of symptomatic patients receiving components of care were: assessment within 72 hours T0= 38%, T1= 64%, T2= 64%;diagnosis T0= 30%, T1= 70%, T2= 72%;management plan T0= 7%, T1= 25%, T2= 23%. Discussion: From this large, multi-site study we identified implementation of our SCAMP intervention resulted in immediate improvements in continence care, that were sustained six months later. This intervention appears promising to increase access to best-practice continence care.

UPDATED RESULTS FROM A NOVEL, LONGITUDINAL, MULTICENTER DISEASE MONITORING PROGRAM (DMP) OF VESTRONIDASE ALFA FOR THE TREATMENT OF MUCOPOLYSACCHARIDOSIS VII (MPS VII)

Background: MPS VII is an ultra-rare, autosomal recessive, debilitating, progressive lysosomal storage disease caused by beta-glucuronidase (GUS) enzyme deficiency. Vestronidase alfa (recombinant human GUS) enzyme replacement therapy is approved in the United States, Europe, and parts of Latin America for the treatment of MPS VII. Methods: The Disease Monitoring Program (DMP) is an ongoing, multicenter observational study collecting standardized real-world data from patients with MPS VII (N ≈ 35 planned) treated with vestronidase alfa or with any other management approach. Investigational sites are centers with expertise in mucopolysaccharidosis treatment. Data will be collected for up to 10 years and include demographics, clinical history, clinical characteristics, cognition, mobility, skeletal disease, pulmonary function, patient and caregiver-reported health-related quality of life, and long-term vestronidase alfa safety and effectiveness. Data are monitored and recorded in compliance with Good Clinical Practice guidelines. Annual individual patient reports will be provided to patients and caregivers. Results: As of 31 May 2021, 20 patients are enrolled: 19 in the treated group and one in the untreated group. Of the 19 treated patients, 14 were treated with vestronidase alfa before DMP enrollment, and five were treated with vestronidase alfa during the DMP. Eleven patients (55%) are male, and 11 patients (55%) are Hispanic or Latino, reflecting that most patients (11 of 20) are enrolled in South America. Mean (SD [range]) age at MPS VII diagnosis was 4.47 (3.99 [0.1-12.0]) years and mean (SD [range]) age at DMP enrollment was 11.08 (7.21 [1.5-26.3]) years. Seven patients (35%) had a history of non-immune hydrops fetalis. For the 14 patients treated prior to DMP enrollment, mean (SD [range]) age at initiation of vestronidase alfa was 9.4 (6.3 [3.0-22.8]) years. For the five patients treated during the DMP, mean (SD [range]) age at initiation of vestronidase alfa was 6.1 (4.5 [2.5-11.5]) years. Three patients who reached two years of treatment in the DMP had an 88% and 75% reduction from baseline in the original (parent) clinical study in dermatan sulfate and chondroitin sulfate uGAG excretion, respectively. Four serious adverse events (SAEs) in two patients have been reported. One SAE, intermittent hypotension, was assessed as an infusion-associated reaction to vestronidase alfa;this SAE did not meet hypersensitivity criteria;this patient had a low positive anti-drug antibody (ADA) titer (1:80) prior to the first administration of vestronidase alfa but did not test ADA positive at any subsequent visit during the DMP. All SAEs were consistent with the known safety profile of vestronidase alfa. No deaths were reported. COVID-19 resulted in travel restrictions for many patients, but only one dose of vestronidase alfa was missed. Nine patients had ADA data analyzed at baseline;of these, four tested positive at initial baseline, but all four subsequently tested negative during the DMP, while three other patients had low positive ADA titers (range: 1:10 to 1:320). All patients with positive ADA samples tested negative for neutralizing ADA, and four had reductions of at least 80% in dermatan sulfate uGAG excretion from baseline in the original (parent) clinical study. Conclusions: Reductions in uGAG demonstrate ongoing effectiveness of vestronidase alfa at DMP Year 2. No new safety concerns were identified, and all patients continue on study. The MPS VII DMP continues to enroll patients and collect data to characterize MPS VII disease presentation, clinical heterogeneity, and progression.

Ensuring an essential supply of allied health professions (ahp) placements: Using crowdsourcing to develop a national call to action

Sustainable growth in the Allied Health Professions (AHP) workforce is an ambition of the United Kingdom's NHS Long Term Plan. However historically, access to good quality placements has been a barrier to increasing pre-registration training numbers. This article focuses on work carried out by Health Education England (HEE) to gain insights on the impact of the COVID-19 pandemic on capacity. Using a pragmatic, embedded mixed-methods approach, insights were gathered using an online workshop, crowdsourcing, open for two weeks in the summer of 2020. AHP placement stakeholders could vote, share ideas or comment. Descriptive data were extracted, and comments made were analysed using inductive thematic analysis. Participants (N = 1,800) made over 8,500 comments. The themes identified included: Diversity of placement opportunity, improved placement coordination, a more joined-up system, supervision models and educator capacity. Alongside considering the challenges to placement capacity, several areas of innovative practice owing to the pandemic were highlighted. Generated insights have shaped the aims and objectives of the Health Education (HEE) pre-registration AHP student practice learning programme for 2020/2021 and beyond. The COVID-19 pandemic has disrupted the delivery of AHP placements. In the absence of face-to-face activities, crowdsourcing provided an online data collection tool offering stakeholders an opportunity to engage with the placement capacity agenda and share learning. Findings have shaped the HEE approach to short-term placement recovery and long-term growth. © 2021 Coventry University. All rights reserved.

Endotoxin activity as a marker for disease severity in SARS-CoV-2 patients in the ICU

INTRODUCTION: Endotoxin Activity Assay (EAA), which measures the chemiluminescent response of the neutrophils to endotoxin using an anti-endotoxin antibody, has been used to predict mortality in patients with gram-negative sepsis. Recent evidence has shown that this indirect method of endotoxin measurement does not account for other causes that may excite or depress neutrophil activity. We sought to evaluate the levels of EAA in patients with severe COVID-19 infections without bacteremia but rather a systemic inflammatory state and acute respiratory distress syndrome. METHODS: This is a single-center, prospective cohort analysis of SARS-CoV-2-positive patients admitted to the ICU at a single academic hospital, from March to June 2020. EAA levels were obtained from each COVID-positive patient at ICU admission. Demographics, as well as the development of bacteremia on blood culture, were abstracted from medical records. Initial EAA values were categorized into low EAA (<0.4), intermediate EAA (0.41-0.60), high EAA (0.61-0.80), and severely high EAA (>0.80). RESULTS: A total of 78 patients were included in the study, with baseline characteristics as follows: mean age 62.9 years, 46% female, with a racial distribution of 72% Black, 15% White, and 4% Asian. Of the 78 COVID-positive patients, only eight were confirmed positive for bacteremia, while the remaining patients had two negative blood cultures. Of the eight bacteremic patients, the EAA level was low in zero patients, intermediate in three, high in four, and severely high in one patient, resulting in 100% of patients with intermediate or higher EAA level. Of the 70 patients without bacteremia, the EAA level was low in 13, intermediate in 10, high in 34, and severely high in 13, resulting in 81.4% of patients with an intermediate or higher EAA level. CONCLUSIONS: Elevated levels of EAA representing significant endotoxemia are frequently observed in nonbacteremic patients with severe SARS-CoV-2 viral infection. The source of the endotoxemia is unidentified. Possible explanations include gut bacterial translocation from the endothelial cell dysfunction that is known to occur with COVID 19 infection, or that EAA is an indicator of a primed neutrophil state. Further investigation of the elevated EAA levels seen in COVID -19 infections is warranted.

Endotoxin levels, as measured by eaa, are elevated in COVID-19 patients admitted to the ICU

INTRODUCTION/HYPOTHESIS: Endotoxin Activity Assay (EAA), which measures the chemiluminescent response of the neutrophils to endotoxin using an anti-endotoxin antibody, has been used to predict mortality in patients with gramnegative sepsis. Recent evidence has shown that this indirect method of endotoxin measurement does not account for other causes that may excite or depress neutrophil activity. We sought to evaluate the levels of EAA in patients with severe COVID-19 infections without bacteremia but rather a systemic inflammatory state and acute respiratory distress syndrome. METHODS: This is a single-center, prospective cohort analysis of SARS-CoV-2-positive patients admitted to the ICU at a single academic hospital, from March to June 2020. EAA levels were obtained from each COVID-positive patient at ICU admission. Demographics, as well as the development of bacteremia on blood culture, were abstracted from medical records. Initial EAA values were categorized into low EAA (<0.4), intermediate EAA (0.41-0.60), high EAA (0.61-0.80), and severely high EAA (>0.80). RESULTS: A total of 78 patients were included in the study, with baseline characteristics as follows: mean age 62.9 years, 46% female, with a racial distribution of 72% Black, 15% White, and 4% Asian. Of the 78 COVID-positive patients, only eight were confirmed positive for bacteremia, while the remaining patients had two negative blood cultures. Of the eight bacteremic patients, the EAA level was low in zero patients, intermediate in three, high in four, and severely high in one patient, resulting in 100% of patients with intermediate or higher EAA level. Of the 70 patients without bacteremia, the EAA level was low in 13, intermediate in 10, high in 34, and severely high in 13, resulting in 81.4% of patients with an intermediate or higher EAA level. CONCLUSIONS: Elevated levels of EAA representing significant endotoxemia are frequently observed in nonbacteremic patients with severe SARS-CoV-2 viral infection. The source of the endotoxemia is unidentified. Possible explanations include gut bacterial translocation from the endothelial cell dysfunction that is known to occur with COVID 19 infection, or that EAA is an indicator of a primed neutrophil state. Further investigation of the elevated EAA levels seen in COVID -19 infections is warranted.