Members Of Working Group Research Articles

Clinico-epidemiological profile of COVID-19 patients admitted during third wave of pandemic in a tertiary care hospital in New Delhi, India.

Even nearly two years after the first reported case, the novel coronavirus (SARS-CoV-2) continues to ebb and flow around the world. A retrospective cohort study was carried out to determine the clinico-epidemiological profile and outcome of the cases. The study analyzed secondary data from 827 patients who presented to our center with COVID-19-related illnesses between December 15, 2021, and February 15, 2022 (third wave in India). There was a significant difference in the vaccination status of patients treated at home and those admitted, with 87.9% having received two doses compared to 74% in the second group being unvaccinated. Patients who were isolated at home recovered at a rate of 99.4%, while hospitalized patients died at a rate of 26.5%. Vaccination reduces the severity of COVID-19; however, constant vigilance for new variants, precautionary measures, and increased vaccination drives are critical moving forward. *Other members of the Safdarjung Hospital COVID-19 working group: B. Lal (Medicine), Harish Sachdeva (Anaesthesiology), Santvana Kohli (Anaesthesiology), Amandeep Jaswal (Anaesthesiology), Sumitra Bachani (Obstetrics and Gynecology), Ajay Kumar (Pediatrics), Rohit Kumar (Pulmonary Medicine), Vidya Sagar Chaturvedi (Surgery), Vinod Chaitanya (Medicine).

Using an Annual Diversity, Equity and Inclusion Dashboard to Accelerate Change in Academic Radiology Departments

Despite widespread interest in creating a more equitable and inclusive culture, a lack of workforce diversity persists in Radiology, in part due to a lack of universal and longitudinal metrics across institutions. In an attempt to establish benchmarks, a subset of the Society of Chairs of Academic Radiology Departments (SCARD) Diversity, Equity and Inclusion (DEI) Committee volunteered to design a DEI dashboard as a potential tool for academic radiology programs to use to document and track their progress. This freely-available, modular dashboard includes suggested (plus optional department-defined) DEI activities/parameters and suggested assessment criteria across three domains: faculty, residents & fellows, and medical students; it can be completed, in whole or in part, by departmental leaders annually. The suggested metrics and their associated rubrics were derived from the collective experiences of the five working group members, all of whom are chairs of academic radiology departments. The resulting dashboard was unanimously approved by the remaining 14 DEI committee members and endorsed by the SCARD board of directors.

A large-scale retrospective analysis of copy number variations in single center using ACMG-ClinGen latest guidelines

Through a retrospective large sample analysis of copy number variants in single center, we explored the technical standards for the interpretation and reporting of constitutional copy-number variants (CNVs) jointly proposed by the American College of Medical Genetics and Genomics (ACMG) and the Clinical Genome Resource (ClinGen) in 2019, analyzing its impact on CNVs ratings and the improvement in the consistency of the classification of CNVs in clinical laboratories. 236 CNVs that assessed as pathogenic, uncertain significant (including likely pathogenic, uncertain and likely benign) by the 2011 ACMG guidelines between August 2018 and December 2019 in our center were re-analyzed. Four working group members of the center reclassified and evaluated 235 CNVs according to 2019 ACMG guidelines. The consistency of clinical significance classification of CNVs was 91% and the α test coefficient was 0.98 among four working group members. Compared with the 2011 and 2019 ACMG technical standards for the CNVs classification, evaluation of pathogenicity and uncertain significant is basically consistent. 90% (45/50) of likely pathogenic and likely benign CNVs were Re-evaluated as variants of uncertain significance, and the difference is significant. The new version ACMG/ClinGen guidelines for the evaluation of CNVs developed semi-quantitative point-based scoring system and help to improve the consistency in clinical classifications. It can also make the interpretation of CNVs more standardized and transparent.

Engaging frontline workers in policy development to support the implementation of measurement-based care: Lessons learned from a field-based workgroup.

Measurement-Based Care (MBC) is the use of patient-reported outcome measures repeatedly over the course of treatment to track progress and empower both providers and patients to collaboratively set goals and plan treatment. The Measurement-Based Care in Mental Health Initiative within the Department of Veterans Affairs' Office of Mental Health and Suicide Prevention partnered with the Post Traumatic Stress Disorder (PTSD) Mentoring Program to create an interdisciplinary field-based workgroup. The workgroup included psychologists, clinical social workers, and mental health counselors from PTSD Clinical Teams. The task of the workgroup was to create guidelines for best practice in delivery of MBC in PTSD Clinical Teams given anticipated policy requiring MBC to be used in PTSD Clinical Teams. Framed in the Strategic Action Field Framework for Policy Implementation Research, the current paper evaluates this hybrid top-down and bottom-up process of policy development. Major barriers included difficulty with the workgroup as an authentic bottom-up process, inability to reach the entire field (e.g., focus groups not widely attended by providers), and limited diversity in the workgroup. Facilitators included using consensus to make decisions, support provided to workgroup members by national operations partners, and collaboration and mutual respect among workgroup members. Workgroup members noted an equal, respectful partnership between operations partners and the workgroup; they reported feeling empowered and believed the viewpoints of the field were included in the guidelines. Further, due to the COVID-19 pandemic, the workgroup included more guidelines specific to telehealth into the guidelines. This hybrid model provides a process through which frontline workers can inform policy development and implementation.

Hearing aid solutions for children with autism

Children with the autistic spectral disorder (ASD) have difficulty processing sensory inputs, especially auditory inputs. There have been a number of technological solutions that have developed based on different approaches in the form of hearing devices, however, limitations include the inability to successfully allow, through whitelisting, important sounds such as fire alarms and the sounds of cars and car horns. This paper proposes a hearing device supported by an application as a solution for children with ASD, the device is based on blacklisting and whitelisting features that allow for a reduction in auditory input through a selective process and contributes to selectivity through whitelisting for safety purposes. The proposed device will reduce distraction associated with hyper-responsiveness to certain auditory inputs, such as those from teachers or working group members, and increase concentration in the child by having fewer distractions.

Response to letters arising from publication of the Academy of Medicine, Singapore clinical guideline on the use of sedation by non-anaesthesiologists during gastrointestinal endoscopy in the hospital setting

Dear Editor, The Academy of Medicine, Singapore (AMS) guideline on the use of sedation by non-anaesthesiologists during gastrointestinal endoscopy in the hospital setting and an accompanying editorial were published in the January 2022 issue of the Annals.1,2 An evidence-based approach was used with reference made to relevant published literature. The workgroup members were Fellows of

Feedback of aggregate patient-reported outcomes (PROs) data to clinicians and hospital end users: findings from an Australian codesign workshop process

ObjectivesPatient-reported outcomes (PROs) are increasingly used to measure the patient’s perspective of their outcomes following healthcare interventions. The aim of this study was to determine the preferred formats for reporting...

Management of Gastroesophageal Reflux Disease in Esophageal Atresia Patients: A Cross-Sectional Survey amongst International Clinicians.

Objectives:After surgical repair, up to 70% of esophageal atresia (EA) patients suffer from gastroesophageal reflux disease (GERD). The ESPGHAN/NASPGHAN guidelines on management of gastrointestinal complications in EA patients were published in 2016. Yet, the implementation of recommendations on GERD management remains poor.We aimed to assess GERD management in EA patients in more detail, to identify management inconsistencies, gaps in current knowledge, and future directions for research.Methods:A digital questionnaire on GERD management in EA patients was sent to all members of the ESPGHAN EA working group and members of the International network of esophageal atresia (INoEA).Results:Forty responses were received. Thirty-five (87.5%) clinicians routinely prescribed acid suppressive therapy for 1–24 (median 12) months. A fundoplication was considered by 90.0% of clinicians in case of refractory GERD with persistent symptoms despite maximal acid suppressive therapy and in 92.5% of clinicians in case of GERD with presence of esophagitis on EGD. Half of clinicians referred patients with recurrent strictures or dependence on transpyloric feeds. Up to 25.0% of clinicians also referred all long-gap EA patients for fundoplication, those with long-term need of acid suppressants, recurrent chest infections and feedings difficulties.Conclusions:Respondents’ opinions on the optimal duration for routine acid suppressive therapy and indications for fundoplication in EA patients varied widely. To improve evidence-based care for EA patients, future prospective multicenter outcome studies should compare different diagnostic and treatment regimes for GERD in patients with EA. Complications of therapy should be one of the main outcome measures in such trials.

European Stroke Organisation (ESO) guideline on pharmacological interventions for long-term secondary prevention after ischaemic stroke or transient ischaemic attack.

Recurrent stroke affects 9% to 15% of people within 1 year. This European Stroke Organisation (ESO) guideline provides evidence-based recommendations on pharmacological management of blood pressure (BP), diabetes mellitus, lipid levels and antiplatelet therapy for the prevention of recurrent stroke and other important outcomes in people with ischaemic stroke or transient ischaemic attack (TIA). It does not cover interventions for specific causes of stroke, including anticoagulation for cardioembolic stroke, which are addressed in other guidelines. This guideline was developed through ESO standard operating procedures and the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology. The working group identified clinical questions, selected outcomes, performed systematic reviews, with meta-analyses where appropriate, and made evidence-based recommendations, with expert consensus statements where evidence was insufficient to support a recommendation. To reduce the long-term risk of recurrent stroke or other important outcomes after ischaemic stroke or TIA, we recommend: BP lowering treatment to a target of <130/80 mmHg, except in subgroups at increased risk of harm; HMGCoA-reductase inhibitors (statins) and targeting a low density lipoprotein level of <1.8 mmol/l (70 mg/dl); avoidance of dual antiplatelet therapy with aspirin and clopidogrel after the first 90 days; to not give direct oral anticoagulant drugs (DOACs) for embolic stroke of undetermined source and to consider pioglitazone in people with diabetes or insulin resistance, after careful consideration of potential risks. In addition to the evidence-based recommendations, all or the majority of working group members supported: out-of-office BP monitoring; use of combination treatment for BP control; consideration of ezetimibe or PCSK9 inhibitors when lipid targets are not achieved; consideration of use of low-dose DOACs in addition to an antiplatelet in selected groups of people with coronary or peripheral artery disease and aiming for an HbA1c level of <53 mmol/mol (7%) in people with diabetes mellitus. These guidelines aim to standardise long-term pharmacological treatment to reduce the burden of recurrent stroke in Europe.

QOL-07. The importance of an onco-fertility program for pediatric neuro-oncology patients

INTRODUCTION: In the Netherlands pediatric oncology care is centralized in one hospital since 2018. 600 new patients a year are seen with 100-120 new neuro-oncology (NO) patients. Of the NO patients 20-25% classify as high risk for infertility (HR) such as patients with medulloblastoma, ependymoma, ATRT and germinoma . An onco-fertility program was started navigated by a nurse-practitioner. The program runs with intense collaboration between the different specialties. All new patients are identified according to the international guidelines on fertility care. The fertility-risk is based on the CED score (cyclofosfamide equivalent dose) and radiotherapy dose. Since 2018 awareness was created by teaching sessions among colleagues, nursing staff, and parent association organizations. METHODS: All HR children are informed by the nurse-practitioner and can be referred for counseling to gynaecology for OTC (ovarian tissue cryopreservation) or urology for sperm cryopreservation or testicular biopsy. Monthly the onco-fertility working-group members discuss cases and research in the field. RESULTS: In 2019, 19% NO cases and in 2020 18% of cases were HR for infertility. In both years 36% of these cases had fertility preservation performed. In 2021, 22% cases HR were identified and in 55% preservation was performed. Reasons for not preserving fertility were diverse, varying from poor prognosis, or too ill to be included. CONCLUSION: Awareness of the fertility risk in NO patients who are HR is necessary. These patients need to be informed, and stratified for counseling and offered fertility preservation before start of their treatment. An active onco-fertility program helps to offer the best option for future fertility for these patients

Increasing the Reuse of Protein Non-Naïve Nonhuman Primates in Pharmaceutical Drug Discovery and Development: An Overview and Industry Position on the Challenges and Benefits.

The IQ Consortium NHP Reuse Working Group (WG) comprises members from 15 pharmaceutical and biotechnology companies. In 2020, the WG developed and distributed a detailed questionnaire on protein non-naïve NHP reuse to the WG member companies. The WG received responses from key stakeholders including principal investigators, facility managers, animal welfare officers and research scientists. This paper's content reflects the consolidated opinion of the WG members and the questionnaire responses on the subject of NHP reuse within nonclinical programs at all stages of research and development. Many of the pharmaceutical companies represented in the working group or participating in the questionnaire have already achieved some level of NHP reuse in their nonclinical programs, but the survey results suggested that there is significant potential to increase NHP reuse further and a need to understand the considerations involved in reuse more clearly. The WG has also focused carefully on the inherent concerns and risks of implementing protein non-naive NHP reuse and has evaluated the best methods of risk assessment and decision-making. This paper presents a discussion on the challenges and opportunities surrounding protein non-naïve NHP reuse and aims to stimulate further industry dialogue on the subject and provide guidance for pharmaceutical companies to establish roadmaps and decision trees enabling increased protein non-naïve NHP reuse. In addition, this paper represents a solid basis for collaborative engagement between pharmaceutical and biotechnology companies with contract research organizations (CROs) to discuss how the availability of protein non-naïve NHP within CROs can be better leveraged for their use within nonclinical studies.

Telehealth as a Means of Enabling Health Equity

The goal of this paper is to provide a consensus review on telehealth delivery prior to and during the COVID-19 pandemic to develop a set of recommendations for designing telehealth services and tools that contribute to system resilience and equitable health. The IMIA-Telehealth Working Group (WG) members conducted a two-step approach to understand the role of telehealth in enabling global health equity. We first conducted a consensus review on the topic followed by a modified Delphi process to respond to four questions related to the role telehealth can play in developing a resilient and equitable health system. Fifteen WG members from eight countries participated in the Delphi process to share their views. The experts agreed that while telehealth services before and during COVID-19 pandemic have enhanced the delivery of and access to healthcare services, they were also concerned that global telehealth delivery has not been equal for everyone. The group came to a consensus that health system concepts including technology, financing, access to medical supplies and equipment, and governance capacity can all impact the delivery of telehealth services. Telehealth played a significant role in delivering healthcare services during the pandemic. However, telehealth delivery has also led to unintended consequences (UICs) including inequity issues and an increase in the digital divide. Telehealth practitioners, professionals and system designers therefore need to purposely design for equity as part of achieving broader health system goals.

MO891: Poor Tolerability of the Standard, Extended, 48h Ambulatory Blood Pressure Monitoring in Haemodialysis Patients

Abstract BACKGROUND AND AIMS Ambulatory blood pressure monitoring (ABPM), extended to 44h or 48h for the diagnosis of hypertension in end-stage kidney disease (ESKD) patients, is recommended by Consensus Documents of the American Society of Nephrology and the European Renal Association. About 10%–20% of individuals in the general population report sleeping problems and other symptoms during 24 h ABPM. Because the longer recording period (44 or 48 h versus 24 h), the notorious sleeping disturbances and the high symptom burden of the ESKD population, the feasibility of the technique may be limited in this population. However, the large-scale tolerability of ABPM in the haemodialysis population, has never been investigated. METHOD We performed an international survey of feasibility and tolerability of 48 h ABPM in six centres in three European countries. These centres are led by motivated clinical nephrologists, all members of the EURECA-m working group. 48 h ABPM recording was proposed to a large, representative sample of the whole dialysis population of these centres. Well validated instruments (AAMI/ESH/ISO) were applied in all centres. As recommended by the European Society of Hypertension guidelines, recordings were made at 15-min intervals during the day and 30 min during the night. Reasons for refusal to undergo the test were accurately registered. A tolerability (symptoms) questionnaire and a specific questionnaire for sleep evaluation were administered to all participants who underwent 48h ABPM. Reasons for not completing of the ABPM monitoring were systematically recorded. RESULTS In the whole haemodialysis population of participating centres including 735 patients, 440 (60%) were invited to participate in the study. Among these patients, 119 (27%) refused to undergo ABPM recording. Reasons for refusal were fear of discomfort (n = 30, 25%), measurement too long (n = 22, 18%), logistic problems (n = 17, 14%), previous negative experience (n = 13, 11%), clinical reasons (n = 12, 10%), other reasons (n = 25). Among the 321 patients who performed the 48h ABPM recording, 29 (9%) did not complete it and the main reason for interrupting the recording were discomfort [12 patients (41%)], followed by device failure [10 patients (34%)]. Among symptoms developed during the ABPM study, frequent interruption of sleeping because of noise or discomfort was reported by 32% of patients, followed by itching (24%) and pain during the measurements (20%). The detailed list of symptoms, is reported in the Table 1. CONCLUSION Overall, about 25% of haemodialysis patients consider 48h ABPM a laborious and discomforting test and prejudicially refuse to undergo it. Among patients who undergo 48h ABPM, itching and interruption of sleeping are complained by about 1/3 of patients. These figures are substantially higher than those reported in studies in the general population and in hypertensive patients and point to peculiar barriers at applying extended ABPM recordings in the haemodialysis population. Studies applying more tolerable instruments and a minimum set of measurements over a shorter time, with a reduced number of measurements overnight, are clinical research priority for extending the use of ABPM in the haemodialysis population.

Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID

BackgroundLong-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce.ObjectiveThe present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected.MethodsThis citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long COVID Working Group (25 persons with Long COVID, four patients with myalgic encephalomyelitis/chronic fatigue syndrome and one relative) were formed. The study included four activities: three remote meetings and one online survey. First, Board members identified the needs and research questions. Second, Working Group members and persons affected by Long COVID (241 respondents, 85.5% with Long COVID, 14.5% with myalgic encephalomyelitis/chronic fatigue syndrome and 7.1% relatives) evaluated the research questions on a 1–5 Likert scale using an online survey. Then the Board gave feedback on this evaluation. Finally, Board members set the priorities for research through voting and discussion.ResultsSixty-eight research questions were generated by the Board and categorised into four research domains (medicine, healthcare services, socioeconomics and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (standard deviation = 1.16) for sex-specific diagnostics to 4.86 (standard deviation = 0.41) for medical questions on treatment. Five topics were prioritised: “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals” and “prevalence of Long COVID in children and adolescents”.ConclusionsTo our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40271-022-00579-7.

'It's Problematic but I'm not Concerned': University Perspectives on Account Sharing

Account sharing is a common, if officially unsanctioned, practice among workgroups, but so far understudied in higher education. We interview 23 workgroup members about their account sharing practices at a U.S. university. Our study is the first to explicitly compare IT and non-IT observations of account sharing as a "normal and easy" workgroup practice, as well as to compare student practices with those of full-time employees. We contrast our results with those in prior works and offer recommendations for security design and for IT messaging. Our findings that account sharing is perceived as low risk by our participants and that security is seen as secondary to other priorities offer insights into the gap between technical affordances and social needs in an academic workplace such as this.?

The WAA welcomes the Israeli Society of Hematology and Transfusion Medicine as their newest society member

The Israeli Transfusion Medicine Working Group (ITMWG) members are engaged in all aspects of Transfusion Medicine and Apheresis. ITMWG members are medical doctors, PhD's, laboratory workers, medical technologists and apheresis operators.

Development of a Community Coalition to Influence Nutrition and Physical Activity in Early Childhood Education.

Recognizing insufficient support for healthy eating and physical activity in early childhood education centers in Greenville, South Carolina, a group of stakeholders formed a workgroup as an organizing structure. Members developed and implemented a 2-year community-based participatory research initiative aimed at nutrition and physical activity policy, systems and environment change in 10 early childhood education centers. This article 1) describes engagement efforts and partnerships leading to formation of the workgroup and initiative, 2) presents data on Workgroup members' knowledge and engagement, and 3) shares lessons learned. Workgroup member knowledge and engagement related to obesity prevention was measured at two time points during the ECE initiative using the "Stakeholder-driven Community Diffusion Survey." Knowledge and engagement scores increased over the measurement period. Scores for engagement were higher than scores for knowledge at both time points. There was a substantial increase in perceived leadership and stewardship, knowledge of intervention factors and how to intervene sustainably, and understanding of local resources and roles. An important strength was stakeholder buy-in and ownership of planning and implementation processes.

Making Decisions About Krabbe Disease Newborn Screening.

Making Decisions About Krabbe Disease Newborn Screening.

Translating Ultrasound into Clinical Practice for the Assessment of Swallowing and Laryngeal Function: A Speech and Language Pathology-Led Consensus Study

Ultrasound (US) has an emerging evidence base for the assessment of swallowing and laryngeal function. Accessibility and technological advances support the use of US as a clinical assessment tool; however, there is insufficient evidence to support its translation into clinical practice. This study aimed to establish consensus on the priorities for translation of US into clinical practice for the assessment of swallowing and laryngeal function. Nominal Group Technique (NGT) was used as a formal method of consensus development. Clinicians and academics, all members of an international US working group, were invited to participate in the study. Two NGT meetings were held, where participants silently generated and then shared ideas. Participants anonymously ranked items. Rankings were aggregated before participants re-ranked items in order of priority. Discussions regarding rankings were recorded and transcribed to inform analysis. Member-checking with participants informed the final analysis. Participants (n = 15) were speech and language pathologists, physiotherapists and sonographers representing six countries. Fifteen items were identified and prioritised 1–13 (including two equally ranked items). Reliability, validity and normative data emerged as key areas for research while development of training protocols and engagement with stakeholders were considered vital to progressing US into practice. Analysis revealed common themes that might be addressed together in research, in addition to the ranked priority. A measured approach to the translation of US into clinical practice will enable effective implementation of this tool. Priorities may evolve as clinical and professional contexts shift, but this study provides a framework to advance research and clinical practice in this field.

Guidelines for short-term medical missions: perspectives from host countries

BackgroundIn the past decade, there has been increasing guideline development for short-term medical missions (STMMs) traveling from high-income to low- and middle-income countries for the purpose of supporting health care services. The ethics of STMMs is criticized in the literature and there is frequently a lack of host country collaboration. This typically results in guidelines which are developed through the lens of the sending (high-income) countries’ staff and organizations. The aim of this paper is to evaluate an existing best practice guideline document from the perspective of host country participants with knowledge of STMMs from Honduras, Malawi, and the Philippines.MethodsThe guideline used for the evaluation consisted of nine best practice elements that were discerned based on literature and the experience of those working within the field. Semi-structured interviews were conducted in a cross-sectional study with participants (n = 118) from the host countries. Thematic analysis was conducted by two researchers and the results were assessed by working group members to confirm interpretations of the data.ResultsOverall, participants expressed a strong interest in having more structured guidance surrounding STMM practices. There was a positive response to and general acceptance of the proposed STMM guidelines, although participants found the 24-page document onerous to use; a companion checklist was developed. The key themes that emerged from the interviews included collaboration and coordination, care for hard-to-reach communities, capacity building, critical products and essential medical supplies, and opportunity and feasibility.ConclusionsHost input suggests that the guidelines provide structured regulation and coordination of the medical mission process and have the potential to improve the way STMMs are carried out. The guidelines have also proven to be a useful tool for the actual implementation of STMMs and can be a tool to strengthen links and trust between mission teams and local health staff. However, local contexts vary considerably, and guidelines must be adapted for local use. It is recommended that STMM teams work in conjunction with host partners to ensure they meet local needs, increase capacity development of local health workers, and provide continuity of care for patients into the local system.