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Patient-reported outcomes measures form the backbone of outcomes evaluation in orthopaedics, with most of the literature now relying on these scoring tools to measure change in patient health status. This patient-reported information is increasingly collected routinely by orthopaedic providers but use of the data is typically restricted to academic research. Developments in electronic data capture and the outcome tools themselves now allow use of this data as part of the clinical consultation. This review evaluates the role of patient reported outcomes data as a tool to enhance daily orthopaedic clinical practice, and documents how develop-ments in electronic outcome measures, computer-adaptive questionnaire design and instant graphical display of questionnaire can facilitate enhanced patient-clinician shared decision making.

The purpose of this research is to investigate the policy of the Prosperous Family Card Program in Tellang Kere Village of Tellu Limpoe District, Bone Regency. The research method used is qualitatively descriptive. This method will provide a complete picture of social phenomena. Data collection techniques applied were observation and interview with key informants; Secretary of the sub-district head, Head of Public Service Section, Head and Village Secretary, Village Head, Community leader, prosperous family card’s recipient community, additional informant: e-warong village agent. The results of the research indicated that the policy of the Prosperous Family Card Program in Tellang Kere Village of Tellu Limpoe District, Bone regency had not been effective. Some obstacles occurred in the location, namely firstly, the lack of education and complete socialization to recipients of The Prosperous Family Card, inactive social assistance so that many people still do not understand the benefits and objectives of the policy. Secondly, the limitations of the internet network forced the village agents to collect beneficiary families somewhere to make withdrawal transactions through Electronic Data Capture, this took time-consuming. Thirdly, the data of the recipient of the Prosperous Family Card was often missed and not meticulous but not accumulated in the following month, and the last, monotonous menu had the potential to raise cholesterol that had an impact the risk of heart attack and diabetes, nevertheless, the public felt that this program had the benefits especially in the time of COVID-19 pandemic.

Introduction The availability of trained Medical Toxicologists in developing countries is limited and education in Medical Toxicology remains inadequate. The lack of toxicology services contributes to a knowledge gap in the management of poisonings. A need existed to investigate the core competencies required by toxicology graduates to effectively operate in a Poisons Information Centre. The aim of this study was to obtain consensus from an expert group of health care workers on these core competencies. This was done by making use of the Delphi technique. Methodology The Delphi survey started with a set of carefully selected questions drawn from various sources including a literature review and exploration of existing curricula. To capture the collective opinion of experts in South Africa, Africa and also globally, three different groups were invited to participate in the study. To build and manage the questionnaire, the secure Research Electronic Data Capture (REDCap) web platform was used. Results A total of 134 competencies were selected for the three rounds and in the end consensus was reached on 118 (88%) items. Panel members agreed that 113 (96%) of these items should be incorporated in a Medical Toxicology curriculum and five (4%) should be excluded. Discussion All participants agreed that effective communication is an essential skill for toxicology graduates. The curriculum can address this problem by including effective pedagogy to enhance oral and written communication skills. Feedback from panellists indicated that the questionnaires were country-specific and not necessarily representative of all geographical locations. This is an example of the ‘battle of curriculum design’ where the context in which the curriculum will be used, will determine the content. Conclusion The Delphi method, based on three iterative rounds and feedback from experts, was effective in reaching consensus on the learning outcomes of a Medical Toxicology curriculum. The study results will ultimately improve education in Medical Toxicology.

Detailed understanding of longitudinal behavior, response to therapy, and applicable biomarkers for interstitial lung diseases (ILDs) is lacking. There is a need for a large multicenter registry that provides researchers and clinicians access to well-characterized data not limited to patients with idiopathic pulmonary fibrosis. The Pulmonary Fibrosis Foundation Patient Registry (PFF-PR) is a database that collects baseline and longitudinal demographic and clinical information about patients with ILDs in the United States. The objective of this study is to describe the patient population, data collection process, and opportunities for retrospective and prospective research with the PFF-PR. Individuals 18 years or older who had ILD diagnosed and who were seen at PFF-PR centers who provided informed consent were eligible to participate. Baseline and longitudinal demographic, spirometric, radiographic, morbidity, and mortality data are recorded into a secure electronic data capture system. Starting in 2016, the PFF-PR has collected data on 2,003 patients at 42 clinical sites in the United States. At the time of enrollment, the mean age of participants was 68 years old. Most (62%) of participants were male, and 58% had a positive smoking history. The mean forced vital capacity was 69% predicted, and the mean diffusing capacity of the lung for carbon monoxide was 43% predicted. Forty-one percent of patients were using supplemental oxygen, and 39% were on antifibrotic therapy. Reasons for attrition were mostly death or transplant, with low rates of loss to follow-up or withdrawal. The PFF-PR is a large multicenter United States-based registry that provides researchers and clinicians access to well-characterized ILD patient data.

PURPOSE: To assess the reasons why patients do not consent to patient-reported outcome (PRO) and electronic PRO data capture components of clinical trials and potential selection bias by having a separate consent. METHODS AND MATERIALS: Selected NRG Oncology trials were included based on disease site and inclusion of PROs and electronic PRO data capture via VisionTree Optimal Care as separate consent questions. Reasons for not participating were assessed. Pretreatment characteristics between patients who did and did not consent were tested using χ(2) and t tests for univariate comparisons and logistic regression for multivariable analyses. RESULTS: Ten trials were selected in head and neck, prostate, gynecologic, breast, lung, and gastrointestinal cancers, with 4 of these trials having electronic PRO data capture. Most patients consented to the PRO component (75.3%) but not electronic PRO data capture (37.8%). More white patients consented to PROs than nonwhite patients across all trials (odds ratio [OR], 0.53; 95% confidence interval [CI], 0.45-0.63; P < .001), and more patients with education after high school consented compared with those with less education (OR, 1.71; 95% CI, 1.46-2.02; P < .001). Patients who are younger (OR, 0.63; 95% CI, 0.47-0.85; P = .002), white (OR, 0.60; 95% CI, 0.44-0.82; P = .001), and a never or former smoker (OR, 0.57; 95% CI, 0.41-0.78; P = .001) are more likely to participate in electronic PRO data capture. CONCLUSIONS: These results suggest that a patient’s race, age, and education can affect whether a patient chooses to consent or is offered to participate in PRO or electronic PRO data capture components. More investigation is needed, but this analysis provides support for making PROs integrated in the trial.

Background In the last two decades, the world faced three epidemics caused by novel coronaviruses, namely, SARS CoV in 2002, MERS CoV in 2012, and the ongoing SARS-CoV-2 that started in late 2019. Despite a growing understanding of SARS-CoV-2 virology, epidemiology, and clinical management strategies, other aspects, such as mode of delivery, vertical transmission, and maternal bonding, remain controversial. The question we faced upon the decision to separate the neonates of SARS-CoV-2 positive mother is whether we follow the principle of "do no harm"? Methods This is a quality improvement project that analyzed all cases of SARS-CoV-2 positive pregnancies that delivered at a major health care system from 3 January 2020 to 6 January 2020. The article was prepared following Standards for Quality Improvement Reporting Excellence (SQUIRE) 2.0 guidelines. Data were prospectively collected and entered into the Research Electronic Data Capture (REDCap). Maternal bonding was defined by events such as rooming-in, skin to skin contact (STSC), and breastfeeding. Descriptive analysis was performed using the same software platform. Intervention We compared neonatal transmission rates between those neonates who experienced bonding versus those who were separated. Results A total of 1989 women were screened for SARS-CoV-2, from which 86 tested positive. Out of 31 analyzed pregnancies, five women (16%) were admitted to ICU and required mechanical ventilation. From the remaining 26 (84%), 17 (65%) opted for rooming-in, 12 (46%) for STSC, and 16 (61%) fed the infants with breastmilk (11 direct breastfeedings and five pumped the breast milk). All neonatal tests for SARS-CoV-2 returned negative. Conclusion Our results have illustrated that maternal bonding appears safe in neonates born to mothers that are SARS-CoV-2 positive.

Purpose As health systems continue to expand pharmacy and clinical services, the ability to evaluate potential medication safety risks and mitigate errors remains a high priority. Workload and productivity monitoring tools for the assessment of operational and clinical pharmacy services exist. However, such tools are not currently available to justify medication safety pharmacy services. The purpose of this study is to determine methods used to assess, allocate, and justify medication safety resources in pediatric hospitals. Methods A 32-question survey was designed and distributed utilizing the Research Electronic Data Capture (REDCap) tool. The survey was disseminated to 46 pediatric hospitals affiliated with the Children’s Hospital Association (CHA). The survey was distributed in October 2018, and the respondents were given 3 weeks to submit responses. Data analysis includes the use of descriptive statistics. Categorical variables were summarized by frequencies and percentages to distinguish the differences between pediatric health systems. Results Of 26 respondents, 15.4% utilized metrics to justify medication safety resources. Metrics utilized were based on medication dispenses, projects, and error coding. Twenty-three percent of respondents were dissatisfied with current pharmacy-based medication safety resources within the organization. There was variability of medication safety resources within pediatric hospitals, including the number of dedicated full-time equivalents, time spent on tasks, and task prioritization. Conclusion Assessing medication safety resources at various pediatric hospitals highlights several potential barriers and opportunities. This information will serve as the foundation for the creation of a standardized workload assessment tool to assist pharmacy leaders with additional resource justification.

Background Efforts to reduce nosocomial spread of COVID-19 have resulted in unprecedented disruptions in clinical workflows and numerous unexpected stressors for imaging departments across the country. Our purpose was to more precisely evaluate these impacts on radiologists through a nationwide survey. Methods A 43-item anonymous questionnaire was adapted from the AO Spine Foundation's survey and distributed to 1521 unique email addresses using REDCap™ (Research Electronic Data Capture). Additional invitations were sent out to American Society of Emergency Radiology (ASER) and Association of University Radiologists (AUR) members. Responses were collected over a period of 8 days. Descriptive analyses and multivariate modeling were performed using SAS v9.4 software. Results A total of 689 responses from radiologists across 44 different states met the criteria for inclusion in the analysis. As many as 61% of respondents rated their level of anxiety with regard to COVID-19 to be a 7 out of 10 or greater, and higher scores were positively correlated the standardized number of COVID-19 cases in a respondent's state (RR = 1.11, 95% CI: 1.02–1.21, p = 0.01). Citing the stressor of “personal health” was a strong predictor of higher anxiety scores (RR 1.23; 95% CI: 1.13–1.34, p, Highlights • Citing the stressor of “personal health” was predictive of higher self-reported anxiety scores. • Individuals who responded with “no coping needed” were less likely to report high levels of anxiety. • Childcare assistance for healthcare workers remains an area of opportunity for institutional support.

Objectives HealthPathways, pioneered in Canterbury, New Zealand, in 2008, is a web-based tool designed to promote health care integration and patient management in primary care and to reduce fragmentation in the delivery of health services. This cross-sectional study evaluated the utilisation and perceptions of this tool among health professionals in Australia and New Zealand. Methods A cross-sectional survey was administered online through Research Electronic Data Capture (REDCap) to general practitioners (GPs), practice nurses and managers, nurse practitioners, specialist and community nurses, hospital clinicians, nurses, managers, and allied health professionals between April and September 2018. The frequency of HealthPathways use in the previous month was modelled as an ordered response using an ordered logistic regression model after adjusting for the possible effects of sex, age, years in clinical practice, location and time spent in practice. Results Health professionals perceived HealthPathways to be useful in primary care management and referral, as well as in the prereferral treatment of patients. GPs in New Zealand, New South Wales and Victoria were 73%, 47% and 27% more likely to have used HealthPathways ≥10 times in the previous month respectively. Conclusion The results suggest that HealthPathways is having a positive effect on healthcare systems in New Zealand and Australia. However, differences in uptake suggests the need for focused implementation, integration into eReferral software and expanding the tool to medical students, registrars, allied health professionals and potentially patients to encourage behavioural change. What is known about the topic? Early evaluations suggest that HealthPathways is a useful tool for health professionals, although uptake and utilisation may be limited. However, there is no comparative evidence regarding uptake and implementation of the tool. What does the paper add? This study is among the first to provide a comparative narrative of the literature assessing the implementation and uptake of HealthPathways across Australia and New Zealand. It is also among the first to compare the perceptions of allied health professionals in the use of HealthPathways across Australia and New Zealand. What are the implications for practitioners? The results of this study suggest the need for focused implementation, integration into eReferral software and expanding the tool to medical students, registrars, allied health professionals and potentially patients to encourage behavioural change.

Background: Three-dimensional (3D) printing is a new technology capable of producing patient-specific 3D cardiac models. Methods: A cross-sectional survey of pediatric cardiologists was conducted. Members of the Canadian Pediatric Cardiology Association and Congenital Cardiac Interventional Study Consortium were invited to participate. A questionnaire was distributed using Research Electronic Data Capture between May and September 2019. Results were analyzed using descriptive statistics, Fisher exact test, and odds ratio. Results: A total of 71 pediatric cardiologists responded. Some 85% (60/71) agreed that patient-specific 3D printed cardiac models are a beneficial tool in treating children with congenital heart disease (CHD); 80% of those (48/60) believe 3D models facilitate communication with colleagues; 49% (35/71) of respondents had access to 3D printing technology; and 77% (27/35) of those were using models for clinical care. Access differed according to geographic location (P = 0.004). Of respondents, Americans were 5.5 times more likely (confidence interval, 1.6-19.2) than Canadians to have access to 3D printing technology. The primary reason for lack of access was financial barriers (50%, 18/36). In clinical practice, surgical planning is the primary use of models (96%, 26/27), followed by interventional catheterization planning (52%, 14/27). Double outlet right ventricle was the most commonly modelled lesion (70%, 19/27). Conclusion: 3D printing is a new technology that is beneficial in the care of children with CHD. Access to 3D printing varies by geographic location. In pediatric cardiology, 3D models are primarily used for procedural planning for CHD lesions with complex 3D spatial relationships. Résumé: Contexte: L’impression en trois dimensions (3D) est une nouvelle technologie permettant de produire des modèles cardiaques 3D sur mesure pour chaque patient. Méthodologie: Une enquête transversale a été menée auprès de cardiologues-pédiatres. Les membres de l’Association canadienne de cardiologie pédiatrique et du Congenital Cardiac Interventional Study Consortium ont été invités à y participer. À cette fin, un questionnaire a été diffusé au moyen de l’outil REDCap (Research Electronic Data Capture) de mai à septembre 2019. Les résultats ont été analysés au moyen de techniques de statistique descriptive, du test exact de Fisher et du rapport de cotes. Résultats: Au total, 71 cardiologues-pédiatres ont répondu au questionnaire. Environ 85 % (60/71) des répondants convenaient que les modèles cardiaques personnalisés à chaque patient et produits par impression 3D sont utiles pour traiter les enfants atteints d’une cardiopathie congénitale; de ce nombre, 80 % (48/60) estimaient que les modèles 3D facilitent la communication entre collègues; 49 % (35/71) avaient accès à la technologie d’impression 3D et, parmi eux, 77 % (27/35) se servaient de modèles pour prodiguer des soins cliniques. L’accès variait selon l’emplacement géographique (p = 0,004). Parmi les répondants, les médecins situés aux États-Unis étaient 5,5 fois plus susceptibles (intervalle de confiance : 1,6-19,2) que les médecins canadiens d’avoir accès à la technologie d’impression 3D. Les ressources financières constituaient le principal obstacle à l’accès à cette technologie (50 %, 18/36). Dans la pratique clinique, les modèles sont surtout utilisés pour planifier les interventions chirurgicales (96 %, 26/27) et le cathétérisme interventionnel (52 %, 14/27). Le ventricule droit à double issue était particulièrement modélisé (70 %, 19/27). Conclusion: L’impression 3D est une nouvelle technologie utile pour soigner les enfants présentant une cardiopathie congénitale. L’accès à cette technologie varie selon l’emplacement géographique. En cardiologie-pédiatrie, les modèles 3D sont surtout utilisés pour planifier les interventions relatives à des cardiopathies congénitales complexes sur le plan tridimensionnel.

The quality of life, in itself, in cancer patients or in osteoporotic individuals, without even considering the side effects of the medication in the first place, has a considerable negative impact on the clinical outcome. The Medication Related Osteonecrosis of the Jaw (MRONJ), in the maxillofacial region, although rare, needs to be addressed with the prime importance. One of the key components of any given preventive treatment strategy is to, create awareness about the medication related unwanted effects, among health care professionals and patients. Objective This study is aimed to explore and assess the awareness level among dental patients about MRONJ, the risk factors, and the high-risk category (who are prone to develop MRONJ). Material and methods This is a prospective interviewer administered research electronic data capture (REDCap) survey. The sample included 68 patients, who are currently taking or will be taking Bisphosphonate (BP), and/or Denosumab, and anti-Angiogenic agent. Data have been analyzed using IBM SPSS software, Results Sixty-eight patients (18 males and 50 females), participated in this study. Only 23 subjects (33.82%) were aware about the MRONJ. Females were more aware about the complications than males. The awareness among the subjects with education at college level appears to be higher than the subjects having education less than high school level. Even though, a dental check- up, is mandatory, prior to starting these medications, to see if any dental treatment is required, only slightly more than half of the patients (54.72%) had a dental checkup. Conclusion This is a novel study in the Middle- East, used to assess awareness about the MRONJ including three type of related medications. Low awareness of MRONJ is alarming. The results of the study will help to initiate the process of providing the education materials, about the side effects and importance of oral hygiene maintenance, giving priority to improve the quality of life in such patients. Awareness of patients regarding the complications must be an important part of health care practice guidelines.

BACKGROUND Simulation-based education is a mainstay in education of pediatric anesthesiology trainees. Despite the known benefits, there is variability in its use and availability among various pediatric anesthesiology fellowship programs. AIM The primary aim was to understand the current state of simulation-based education among pediatric anesthesiology fellowship programs and define barriers that impede the development of an effective simulation program. METHODS This survey-based, observational study of simulation activities within United States-based pediatric anesthesiology fellowship programs was approved by the Institutional Review Boards (IRB) of the authors' institutions. A 35-question survey was developed in an iterative manner by simulation educators (AA, WW, DY) and a statistician familiar with survey-based research (AN) using research electronic data capture (REDCap) for tool development and data collation. Descriptive and thematic analyses were performed on the quantitative and qualitative responses in the survey, respectively, and were stratified with small, medium, and large fellowship programs. RESULTS Forty-five of 60 (75%) fellowship programs responded to the survey. The presence of a dedicated simulation program director and number of simulation instructors was positively associated with the size of program and years in operation. Dedicated simulation support was variable across programs and was usually present within the larger programs. A positive association also existed for educational activities among all programs mostly based on size of program and years in operation. Protected time was the most commonly cited barrier to having a comprehensive and sustainable simulation program. There was general agreement for establishing a standardized and shared curriculum among fellowship programs. Approximately 70% of simulation programs had no formal simulation instructor training requirement. CONCLUSIONS Simulation-based curricula are broadly offered by many fellowship programs. Improved collaboration locally, regionally, and nationally may improve educational opportunities for fellowship programs, particularly the small ones. These efforts may begin with the development of a standardized curriculum and formal instructor training programs.

Despite considerable data from randomized controlled trials supporting use of behavioral therapies for anxiety disorders and anxiety-related disorders, there is a relative scarcity of data demonstrating that such findings are generalizable to patients in nonresearch settings, and a lack of standardized repeated outcome measurement in such settings. Using one of the largest examinations of naturalistic outcomes of behavioral therapies in treatment-seeking patients (N = 489), we examined the clinical characteristics and treatment outcomes of patients seeking treatment for anxiety and anxiety-related disorders in the past 3 years. Patients seeking treatment at a clinic specializing in cognitive-behavioral therapy (CBT) completed self-report questionnaires via an electronic data capture system and diagnostic interview at baseline, and were reassessed at mid- and posttreatment. Patients with anxiety and related disorders were assessed for changes in symptom severity and secondary outcomes (impairment/functioning, quality of life, and depression) over the course of therapy. Patients showed clinically significant and statistically reliable improvement in anxiety symptom severity scores over treatment (p < .001), after controlling for number of sessions received. Patients also showed significant improvement in depression, quality of life, and functioning (p values ≤ .001). We also found significant improvement in disorder-specific symptoms, including obsessive-compulsive disorder, posttraumatic stress disorder, generalized anxiety disorder, and social anxiety disorder (p values ≤ .001). Importance of, and ways to facilitate, integration of more routine assessment of a broader range of symptoms via online assessment systems and methods to better determine the effectiveness of CBT in naturalistic clinics are discussed.

Purpose We previously validated a visual aid for the use in the consent process for an appendectomy showing improved parental satisfaction and understanding. In this study, we evaluated provider satisfaction and perceived value of using the visual aid. Methods An IRB approved survey was developed assessing provider experience with use of the visual aid. This was distributed and analyzed via Research Electronic Data Capture (RedCap) Database. Results We administered 58 surveys (45% response rate). Participants included faculty (n = 2), fellows (n = 1), residents (n = 6), and physician assistants (n = 17). The visual aid was used > 10 times by 50% of providers. The most common reason for not using the visual aid was not remembering it was available. Nearly half (40%) did not feel the visual aid added any time. 9/20 (45%) felt it added a small amount of time. Slightly over half of providers (52%) felt using the visual aid significantly increased family ability to give informed consent and made the consenting process easier for both providers and families. Conclusion Using a visual aid in consenting families for appendectomy does not add significant time and subjectively improves the process for providers and increases provider perception of parental understanding. Level of Evidence Cost effectiveness, Level IV.

Regional and/or national severe asthma registries provide valuable country-specific information. However, they are often limited in scope within the broader definitions of severe asthma, have insufficient statistical power to answer many research questions, lack intraoperability to share lessons learned, and have fundamental differences in data collected, making cross comparisons difficult. What is missing is a worldwide registry which brings all severe asthma data together in a cohesive way, under a single umbrella, based on standardized data collection protocols, permitting data to be shared seamlessly. The International Severe Asthma Registry (ISAR; http://isaregistries.org/) is the first global adult severe asthma registry. It is a joint initiative where national registries (both newly created and preexisting) retain ownership of their own data but open their borders and share data with ISAR for ethically approved research purposes. Its strength comes from collection of patient-level, anonymous, longitudinal, real-life, standardized, high-quality data (using a core set of variables) from countries across the world, combined with organizational structure, database experience, inclusivity/openness, and clinical, academic, and database expertise. This gives ISAR sufficient statistical power to answer important research questions, sufficient data standardization to compare across countries and regions, and the structure and expertise necessary to ensure its continuance and the scientific integrity and clinical applicability of its research. ISAR offers a unique opportunity to implement existing knowledge, generate new knowledge, and identify the unknown, therefore promoting new research. The aim of this commentary is to fully describe how ISAR may improve our understanding of severe asthma.

OBJECTIVE Intimate partner violence (IPV) is a serious public health concern and impacts the entire family unit, particularly children. We implemented an IPV screening and referral program in an urban pediatric emergency department (ED) and aimed to screen 30% of patient families for IPV by January 1, 2017. METHODS We used a quality improvement initiative using a nonverbal screening card to screen families when the caregiver was the sole adult present and spoke English and/or Spanish, and the patient was medically stable. Interventions included education, culture of screening initiatives, feedback, and process changes to emergency medical record (EMR) documentation. The primary outcome measure was percentage of caregivers screened in the ED over time. Our balancing measure was ED length of stay. RESULTS After process improvement implementations that include requiring IPV screen documentation in the EMR, using Research Electronic Data Capture for referrals, and standardizing and simplifying the screening process, caregiver screening rates increased to 30% and have remained consistently at or above that rate during the 15-month postevaluation phase. This intervention did not impact length of stay in the ED. CONCLUSIONS An innovative multiphase quality improvement approach to screen for IPV using a nonverbal screening card and technology within the EMR was successfully implemented in our pediatric ED. Both IPV screening and documentation rates demonstrated greatest improvement and sustainability after process improvements over other initiatives.

Background\ud \ud Studies in separate cohorts suggest possible discrepancies between inhaled medicines supplied (median 50-60%) and medicines used (median 30-40%). We performed the first study that directly compares CF medicine supply against use to identify the cost of excess medicines supply.\ud \ud \ud \ud Methods\ud \ud This cross-sectional study included participants from 12 UK adult centres with ≥1 year of continuous adherence data from data-logging nebulisers. Medicine supply was measured as medication possession ratio (MPR) for a 1-year period from the first suitable supply date. Medicine use was measured as electronic data capture (EDC) adherence over the same period. The cost of excess medicines was calculated as whole excess box(es) supplied after accounting for the discrepancy between EDC adherence and MPR with 20% contingency.\ud \ud \ud \ud Results\ud \ud Among 275 participants, 133 (48.4%) were females and mean age was 30 years (95% CI 29-31 years). Median EDC adherence was 57% (IQR 23-86%), median MPR was 74% (IQR 46-96%) and the discrepancy between measures was median 14% (IQR 2-29%). Even with 20% contingency, mean potential cost of excess medicines was £1,124 (95% CI £855-1,394), ranging from £183 (95% CI £29-338) for EDC adherence ≥80% to £2,017 (95% CI £1,507-2,526) for EDC adherence

More data are needed to characterize the perceptions of dermatology by nondermatologist physicians in order to address how current perceptions may be improved. Residency program directors of 21 medical specialties were contacted by e-mail and directed to a survey created with Research Electronic Data Capture software. Data from survey responses were collated and analyzed. A total of 80 residency program directors completed the survey. Physicians who worked more frequently with dermatologists were more likely to describe dermatologists positively. Most physicians believed dermatologists manage skin conditions, but fewer knew that they also manage hair, nail, or mucosal conditions. Cross-specialty collaboration between nondermatologists and dermatologists is associated with positive perceptions of dermatology. Further collaboration could provide the opportunity to educate physicians regarding the conditions treated by dermatologists and how their expertise may benefit patient care.

Background COVID-19 is highly contagious and healthcare workers are at a higher risk of contracting the disease since they are at the frontline in an effort to control and manage it. Inadequate knowledge on COVID-19 and poor practices and preventive measures among healthcare workers may lead to the rapid spread of the disease thereby limiting the ability to manage the COVID-19 pandemic. The objective of this study was to assess the level of knowledge, risk perception, preparedness for COVID-19 and vaccine acceptability among healthcare workers in Kenya. Methods A cross-sectional study was conducted from December 2020 to January 2021 to assess the level of knowledge of health workers, perception of risk and preparedness to handle COVID-19 in Kenya. A link to an online self-administered questionnaire hosted on the Research Electronic Data Capture application (REDCap) was disseminated to health workers across the country via text messages, emails and social media. We collected data on demographics, knowledge, perception of risk and preparedness for COVID-19 and vaccine acceptance. Data collected in REDCap was then transferred to SPSS version 20 for analysis. Bivariate correlation analyses were used to determine associations between variables. P-value of

BACKGROUND: The availability of accurate, reliable, and timely clinical data is crucial for clinicians, researchers, and policymakers so that they can respond effectively to emerging public health threats. This was typified by the recent SARS-CoV-2 pandemic and the critical knowledge and data gaps associated with novel Coronavirus 2019 disease (COVID-19). We sought to create an adaptive, living data mart containing detailed clinical, epidemiologic, and outcome data from COVID-19 patients in our healthcare system. If successful, the approach could then be used for any future outbreak or disease. METHODS: From 3/13/2020 onward, demographics, comorbidities, outpatient medications, along with 75 laboratory, 2 imaging, 19 therapeutic, and 4 outcome-related parameters, were manually extracted from the electronic medical record (EMR) of SARS-CoV-2 positive patients. These parameters were entered on a registry featuring calculation, graphing tools, pivot tables, and a macro programming language. Initially, two internal medicine residents populated the database, then professional data abstractors populated the registry. Clinical parameters were developed with input from infectious diseases and critical care physicians and using a modified COVID-19 worksheet from the U.S. Centers for Disease Control and Prevention (CDC). Registry contents were migrated to a browser-based, metadata-driven electronic data capture software platform. Eventually, we developed queries and used various business intelligence (BI) tools which enabled us to semi-automate data ingestion of 147 clinical and outcome parameters from the EMR, via a large U.S. hospital-based, service-level, all-payer database. Statistics were performed in R and Minitab. RESULTS: From March 13, 2020 to May 17, 2021, 549,691 SARS-CoV-2 test results on 236,144 distinct patients, along with location, admission status, and other epidemiologic details are stored on the cloud-based BI platform. From March 2020 until May 2021, extraction of clinical-epidemiologic parameter had to be performed manually. Of those, 543 have had >/=75 parameters fully entered in the registry. Ten clinical characteristics were significantly associated with the need for hospital admission. Only one characteristic was associated with a need for ICU admission. Use of supplemental oxygen, vasopressors and outpatient statin were associated with increased mortality. Initially, 0.5hrs −1.5 hours per patient chart (approximately 450-575 person hours) were required to manually extract the parameters and populate the registry. As of May 17, 2021, semi-automated data ingestion from the U.S. hospital all-payer database, employing user-defined queries, was implemented. That process can ingest and populate the registry with 147 clinical, epidemiologic, and outcome parameters at a rate of 2 hours per 100 patient charts. CONCLUSION: A living COVID-19 registry represents a mechanism to facilitate optimal sharing of data between providers, consumers, health information networks, and health plans through technology-enabled, secure-access electronic health information. Our approach also involves a diversity of new roles in the field, such as using residents, staff, and the quality department, in addition to professional data extractors and the health informatics team. Initially, due to the overwhelming number of infections that continues to accelerate, and the labor/time intense nature of the project, only a small fraction of all patients with COVID-19 had all parameters entered in the registry. Therefore, this report also offers lessons learned and discusses sustainability issues, should others wish to establish a registry. It also highlights the registry's local and broader public health significance. Beginning in June 2021, whole-genome sequencing results such as lineages harboring important viral mutations, or variants of concern will be linked to the clinical meta-data.

Background Historically, the Deaf community and audiologists have had differing views concerning hearing loss intervention. Even so, members of the Deaf community may see an audiologist for a variety of reasons and it is important that audiologists understand how to best work with these individuals. Professional audiological organizations encourage cultural competence when working with different cultures, including the Deaf community. Purpose This study investigates audiologists' current cultural competency and exposure to, knowledge of, and attitudes towards Deaf individuals. Research Design A survey was sent out to 600 audiologists and descriptive analyses was completed. Data Collection and Analysis Study data were managed using REDCap electronic data capture tools and subsequently tabulated for each of the various survey questions. Results Findings indicate that audiologists have relatively limited exposure to this population in a clinical setting, most use interpreters, and most would like to take more ASL courses. Audiologists' attitudes were positive in serving members from the Deaf community. Conclusion Findings suggest that more education on the use of interpreters would be beneficial. Future research may include examining the Deaf community's experience with audiologists, and the impact of exposure and other variables on the knowledge of and interactions with this population.

BackgroundTo control the spread of the novel Coronavirus disease 2019 (COVID-19) caused by severe acute respiratory syndrome novel Coronavirus-2 (SARS-CoV-2), countries around the world subsequently implemented several public health measures, including the adoption of mandatory institutional quarantine for close contacts. This study explored the experiences of individuals who underwent institutional quarantine in The Gambia to inform government measures to increase its effectiveness and reduce its associated negative impacts.MethodsQuestionnaires were administered via mobile phone call with data collectors calling and directly recording participant responses on a tablet in an electronic online form developed in REDCap (Research Electronic Data Capture). The questionnaire contained questions on COVID-19 related knowledge, health care behaviour, attitudes, perceptions and stigma. Data were analysed using STATA v.13 (Stata Corp, College Station, TX, USA).ResultsIn total, 205 adults who observed the mandatory institutional quarantine were interviewed. There was varied knowledge of COVID-19 causes, spread, symptoms, diagnosis, treatment, and severity. Participants believed the purpose of quarantine was monitoring for signs and symptoms of coronavirus disease, testing for SARS-CoV-2, separation from the community, and protection from coronavirus disease. While a majority reported positive experiences while in quarantine, some expressed prominent dissatisfaction related to the essential services and quality of care provided. Different forms of stigma were also experienced before, during and after the quarantine experience.ConclusionThis study provides important information on quarantine experiences in The Gambia during the global COVID-19 pandemic. The Ministry of Health in The Gambia and other countries could improve the experience of quarantined individuals by consistently providing psychosocial support, compensation for loss of earnings, and timely provision of SARS-CoV-2 test results. Furthermore, stigma experiences and practices should be addressed during and after individuals stay in quarantine via the provision of psychosocial support.

The FAIR Principles are supported by various initiatives in the biomedical community. However, little is known about the knowledge and efforts of individual clinical researchers regarding data FAIRification. We distributed an online questionnaire to researchers from six Dutch University Medical Centers, as well as researchers using an Electronic Data Capture platform, to gain insight into their understanding of and experience with data FAIRification. 164 researchers completed the questionnaire. 64.0% of them had heard of the FAIR Principles. 62.8% of the researchers spent some or a lot of effort to achieve any aspect of FAIR and 11.0% addressed all aspects. Most researchers were unaware of the Principles’ emphasis on both human- and machine-readability, as their FAIRification efforts were primarily focused on achieving human-readability (93.9%), rather than machine-readability (31.2%). In order to make machine-readable, FAIR data a reality, researchers require proper training, support, and tools to help them understand the importance of data FAIRification and guide them through the FAIRification process.

Rehabilitation is a person-centred approach that optimizes functioning to reduce impairments in individuals with illness, injury or disability. Patient-reported outcome measures (PROMs) have a role in rehabilitation to inform clinical practice, enhance patient-centered care, support health services programming, direct performance measurement, and contribute to quality improvement. A Canadian provincial health system implemented a Rehabilitation Model of Care that provides a real-world perspective on the adoption of a standardized PROM, the EuroQol EQ-5D-5L, in the community rehabilitation setting. This article will provide an overview of PROMs implementation in the community rehabilitation context, and discuss key facilitators and challenges to implementation within the 18 early adopter sites and with the spread and scale to 152 urban and rural sites. A change management approach, contextualized local coaching and strong leadership support were facilitators in the initial phases of implementation. Adequate resources and infrastructure from technological platforms for electronic data capture and visualization were assets in addition to clinical teams that had existing strong quality improvement cultures to collect PROMS in existing workflows. Challenges to implementation include the clinical relevance of the PROM, difficulty with contextualization to suit diverse clinical and programmatic teams, and the need for further knowledge sharing activities to build readiness for adoption. The implementation of PROMs in community rehabilitation has added value at the clinical (micro), programmatic (meso) and health system level (macro). Clinically, it has promoted the importance of incorporating the patients’ voice into outcome measurement. At the program level, the cultivation of a data informed learning community was fostered as teams make improvements and use data to inform future program growth or service changes. Finally, at the health system level, data visualization promotes transparency and accountability with performance across the province and the standardized use of the EQ-5D-5L provides a consistent language to promote measurement throughout the health system.

Globally, meat inspection provides data for animal health surveillance. However, paper-based recording of data is often not reported through to higher authorities in sufficient detail. We trialled the use of an electronic meat inspection form in Kenyan slaughterhouses, in lieu of the currently used paper-based format. Meat inspectors in two ruminant slaughterhouses completed and submitted an electronic report for each animal slaughtered at their facility. The reports, which captured information on the animal demographics and any eventual condemnations, were stored in a central database and available in real-time. A stakeholder meeting was held towards the end of the study. Over the 2.75 year study period, 16,386 reports were submitted; a downward linear trend in the monthly submissions was noted. There was a week effect, whereby more reports were submitted on the market day. Of the slaughtered animals, 23% had at least a partial condemnation. The most frequently condemned organs were the liver, lungs and intestines; the primary reasons for condemnations were parasitic conditions. Lack of feedback and difficulty capturing animal origin information were the primary challenges highlighted. The study demonstrated that electronic data capture is feasible in such challenging environments, thereby improving the timeliness and resolution of the data collected.

Recently, patient advocacy groups started using the name Gould syndrome to describe clinical features of COL4A1 and COL4A2 mutations. Gould syndrome is increasingly identified in genetic screening panels, and because it is a rare disease, there is a disproportionate burden on families to understand the disease and chart the course for clinical care. Among the chief concerns for caregivers of children with Gould syndrome are the challenges faced because of epilepsy, including severe manifestations such as infantile spasms. To document the concerns of the patient population, the Gould Syndrome Foundation established the Gould Syndrome Global Registry (GSGR).The Gould Syndrome Foundation developed questions for the GSGR with iterative input from patients and caregivers. An institutional review board issued an exemption determination before data collection began. Participants were recruited through social media and clinician referrals. All participants consented electronically, and the data were collected and managed using REDCap electronic data capture tools. De-identified data representing responses received between October 2019 and February 2021 were exported and analyzed with IBM SPSS 27 using descriptive statistics (mean, standard deviation, frequency, range, and percent).Seventy families from twelve countries provided data for the registry, representing 100 affected people (40 adults and 60 children). This analysis represents a subanalysis of the 35 out of 60 children=18 years of age who reported a history of seizures. Nearly half of these participants were diagnosed with infantile spasms. Participants with epilepsy frequently reported developmental delays (88.6%), stroke (60.0%), cerebral palsy (65.7%), and constipation (57.1%). Ten (28.6%) children use a feeding tube. Despite the fact that more than half of respondents reported stroke, only 34.3% reported ever receiving education on stroke recognition.Here we describe the development and deployment of the first global registry for individuals and family members with Gould syndrome, caused by mutations in COL4A1 and COL4A2. It is important for pediatric neurologists to have access to resources to provide families upon diagnosis. Specifically, all families with Gould Syndrome must have access to infantile spasms awareness and stroke education materials. The Gould Syndrome Foundation is planning several improvements to this patient registry which will encourage collaboration and innovation for the benefit of people living with Gould syndrome.

The Gut Cell Atlas (GCA), an initiative funded by the Helmsley Charitable Trust, seeks to create a reference platform to understand the human gut, with a specific focus on Crohn’s disease. Although a primary focus of the GCA is on focusing on single-cell profiling, we seek to provide a framework to integrate other analyses on multi-modality data such as electronic health record data, radiological images, and histology tissues/images. Herein, we use the research electronic data capture (REDCap) system as the central tool for a secure web application that supports protected health information (PHI) restricted access. Our innovations focus on addressing the challenges with tracking all specimens and biopsies, validating manual data entry at scale, and sharing organizational data across the group. We present a scalable, cross-platform barcode printing/record system that integrates with REDCap. The central informatics infrastructure to support our design is a tuple table to track longitudinal data entry and sample tracking. The current data collection (by December 2020) is illustrated with types and formats of the data that the system collects. We estimate that one terabyte is needed for data storage per patient study. Our proposed data sharing informatics system addresses the challenges with integrating physical sample tracking, large files, and manual data entry with REDCap.

Clinical trials are a multi-billion dollar industry. One of the biggest challenges facing the clinical trial research community is satisfying Part 11 of Title 21 of the Code of Federal Regulations [7] and ISO 27789 [40]. These controls provide audit requirements that guarantee the reliability of the data contained in the electronic records. Context-aware smart devices and wearable IoT devices have become increasingly common in clinical trials. Electronic Data Capture (EDC) and Clinical Data Management Systems (CDMS) do not currently address the new challenges introduced using these devices. The healthcare digital threat landscape is continually evolving, and the prevalence of sensor fusion and wearable devices compounds the growing attack surface. We propose Scrybe, a permissioned blockchain, to store proof of clinical trial data provenance. We illustrate how Scrybe addresses each control and the limitations of the Ethereum-based blockchains. Finally, we provide a proof-of-concept integration with REDCap to show tamper resistance.

Background Avoidance of unnecessary antimicrobial administration is a key tenet of antimicrobial stewardship; knowing the optimal duration of therapy obviates over-treatment. However, little research has been performed to establish course lengths for common canine infections. In clinical practice, antimicrobial therapy is frequently prescribed in dogs presenting lower urinary tract signs (haematuria, pollakiuria and dysuria/stranguria). The proposed length of treatment in International Consensus guidelines has decreased with each iteration, but these recommendations remain arbitrary and largely extrapolated from experience in people. Methods The objective of this prospective, multi-centre study is to find the shortest course duration that is non-inferior to the standard duration of 7 days of amoxicillin/clavulanate in terms of clinical outcomes for female dogs with lower urinary tract signs consistent with a urinary tract infection. An electronic data capture platform will be used by participating veterinarians working in clinical practice in the United Kingdom. Eligible dogs must be female, aged between 6 months and 10 years and have lower urinary tract signs of up to seven days’ duration. Enrolment will be offered in cases where the case clinician intends to prescribe antimicrobial therapy. Automatic pseudo-randomisation to treatment group will be based on the day of presentation (Monday-Friday); all antimicrobial courses will be completed on the Sunday after presentation generating different treatment durations. Follow-up data will be collected 1, 8 and 22–26 days after completion of the antimicrobial course to ensure effective safety netting, and to monitor short-term outcome and recurrence rates. Informed owner consent will be obtained in all cases. The study is approved by the Ethical Review Board of the University of Nottingham and has an Animal Test Certificate from the Veterinary Medicine’s Directorate. Discussion This study has been designed to mirror current standards of clinical management; conclusions should therefore, be widely applicable and guide practising veterinarians in their antimicrobial decision-making process. A duration-response curve will be created allowing determination of the optimal treatment duration for the management of female dogs with lower urinary tract signs. It is hoped that these results will contribute valuable information to improve future antimicrobial stewardship as part of a wider one-health perspective.

Background Patient data registries that are FAIR—Findable, Accessible, Interoperable, and Reusable for humans and computers—facilitate research across multiple resources. This is particularly relevant to rare diseases, where data often are scarce and scattered. Specific research questions can be asked across FAIR rare disease registries and other FAIR resources without physically combining the data. Further, FAIR implies well-defined, transparent access conditions, which supports making sensitive data as open as possible and as closed as necessary. Results We successfully developed and implemented a process of making a rare disease registry for vascular anomalies FAIR from its conception—de novo. Here, we describe the five phases of this process in detail: (i) pre-FAIRification, (ii) facilitating FAIRification, (iii) data collection, (iv) generating FAIR data in real-time, and (v) using FAIR data. This includes the creation of an electronic case report form and a semantic data model of the elements to be collected (in this case: the “Set of Common Data Elements for Rare Disease Registration” released by the European Commission), and the technical implementation of automatic, real-time data FAIRification in an Electronic Data Capture system. Further, we describe how we contribute to the four facets of FAIR, and how our FAIRification process can be reused by other registries. Conclusions In conclusion, a detailed de novo FAIRification process of a registry for vascular anomalies is described. To a large extent, the process may be reused by other rare disease registries, and we envision this work to be a substantial contribution to an ecosystem of FAIR rare disease resources.

Huntington’s Disease (HD) is a rare inherited neurodegenerative disorder with a typical onset between the ages of 30 - 50. Juvenile onset Huntington’s Disease (JoHD), defined by onset of symptoms before the age of 21, manifests differently from adult-onset HD. JoHD, is thought to be present in approximately 5% of HD cases, although the exact prevalence is unknown. It has not been studied extensively. JOIN-HD is a prospective, observational, multi-national patient registry of individuals (both patients and caregivers) affected by JoHD. The primary objective of the registry is to identify individuals affected by JoHD and to map their locations globally. Secondary objectives include supporting focused research for this population and identifying unmet needs of JoHD families to improve advocacy, care and support. It is anticipated that JOIN-HD will serve as a tool to facilitate recruitment to future research and clinical trials through the identification of potentially eligible participants. Pre-registration for JOIN-HD opened in Q1 2021, and Stage I is due to launch in Q3 2021. Participants will be invited to self-enrol and participate remotely via an electronic data capture portal. Stage I will capture participant demographics and information about the links participants have with the HD community. Two further stages of the registry are planned, with Stage II collecting data on medical history/experience of JoHD and Stage III incorporating a Clinician led interview.

Objectives To share our approach for designing, developing, and deploying the Research Electronic Data Capture (REDCap) Mobile Application, details about its dissemination and support through the REDCap Consortium, and a set of lessons learned and guidance recommendations for others developing mobile platforms to support research in regions or situations with internet scarcity. Materials and Methods We defined minimum viable product requirements centered around Android and iOS platform availability, data capture specifications and project initiation workflow, study data synchronization, and data security. After launch, we added features based on feedback from end-users and REDCap administrators. We prioritized new features based on expected impact, difficulty, and anticipated long-term cost for sustainability. Results We chose Apache Cordova, a combined iOS and Android development framework, based on targeted end-user technology expectations, available programmer resources, and the need to provide solutions for resource-limited settings. The REDCap Mobile Application was launched in 2015, has been enabled at over 800 REDCap Consortium partner organizations, and has supported diverse scientific studies around the world. Discussion Apache Cordova enabled early software releases for both iOS and Android, but required ongoing optimization efforts to improve software responsiveness. Developing a robust and efficient mobile device synchronization architecture was difficult without direct access to global network infrastructures for testing. Research teams in sub-Saharan Africa helped our development team understand and simulate real-world scenarios of intermittent internet connectivity. Conclusion Guidance recommendations based on designing, developing, deploying, and disseminating the REDCap Mobile Application may help other teams looking to develop clinical research informatics applications.

On March 26, 2020, Colorado instituted stay-at-home orders to reduce community transmission of SARS-CoV-2, the virus that causes coronavirus disease 2019 (COVID-19). To inform public health messaging and measures that could be used after reopening, persons with laboratory-confirmed COVID-19 during March 9-26 from nine Colorado counties comprising approximately 80% of the state's population† (Adams, Arapahoe, Boulder, Denver, Douglas, El Paso, Jefferson, Larimer, and Weld) were asked about possible exposures to SARS-CoV-2 before implementation of stay-at-home orders. Among 1,738 persons meeting the inclusion criteria§ in the Colorado Electronic Disease Surveillance System, 600 were randomly selected and interviewed using a standardized questionnaire by telephone. Data collection during April 10-30 included information about demographic characteristics, occupations, and selected activities in the 2 weeks preceding symptom onset. During the period examined, SARS-CoV-2 molecular testing was widely available in Colorado; community transmission was documented before implementation of the stay-at-home order. At least three attempts were made to contact all selected patients or their proxy (for deceased patients, minors, and persons unable to be interviewed [e.g., those with dementia]) on at least 2 separate days, at different times of day. Data were entered into a Research Electronic Data Capture (version 9.5.13; Vanderbilt University) database, and descriptive analyses used R statistical software (version 3.6.3; The R Foundation).

The nationwide lockdown implemented due to COVID-19 drastically affected the working pattern of people. Only limited staff were allowed to Work At Office (WAO) while the rest were asked to Work From Home (WFH). Employees of both the categories faced challenges due to restricted movements and safety policies. The study was planned to assess and compare the lifestyle changes of WAO and WFH employees during the lockdown. An online cross-sectional study was designed which included employees of both Government and private sectors. Electronic Data Capture method was used to collect the data after obtaining their online consent and/assent forms by circulating a web-page developed using Research Electronic Data Capture software system. Multinomial logistic regression analysis revealed that the employees of WFH were at a higher risk than WAO with respect to their food intake and eating patterns. Our analysis indicated that the risk of weight gain was higher (OR: 1.51, P < 0.005) in WFH group besides, a significant (P

This study aims to produce instruments as a reference for measuring the quality of EDC system services from the acquirer to increase merchant loyalty. The dimensions of the SERVQUAL instruments namely reliability, assurance, tangible, responsiveness and empathy are adapted to produce EDC system quality measurement instruments with 4 dimensions as follows: business attentiveness; business availability; system dependability; credibility. Service quality is an important factor in merchant loyalty, so acquirers need to measure service quality to find out how the service quality factors of an EDC (electronic data capture) system can increase merchant loyalty. The indicators of measurement instruments must always be adjusted to the business development of the EDC system so that the accuracy of the measurement instruments of the EDC system's service quality will be maintained. Keywords: Electronic Data Capture, Service Quality

Background:Research Electronic Data Capture (REDCap) is a secure, web-based electronic data capture application for building and managing surveys and databases. It can also be used for study management, data transfer, and data export into a variety of statistical programs. REDcap was developed and supported by the National Center for Advancing Translational Sciences Program and is used in over 3700 institutions worldwide. It can also be used to track and measure stakeholder engagement, an integral element of research funded by the Patient-Centered Outcomes Research Institute (PCORI). Continuously and accurately tracking and reporting on stakeholder engagement activities throughout the life of a PCORI-funded trial can be challenging, particularly in complex trials with multiple types of engagement.Methods:In this paper, we show our approach for collecting and capturing stakeholder engagement activities using a shareable REDCap tool in one of the PCORI’s first large pragmatic clinical trials (the Comprehensive Post-Acute Stroke Services) to inform other investigators planning cluster-randomized pragmatic trials. Benefits and challenges are highlighted for researchers seeking to consistently monitor and measure stakeholder engagement.Conclusions:We describe how REDCap can provide a time-saving approach to capturing how stakeholders engage in a PCORI-funded study and reporting how stakeholders influenced the study in progress reports back to PCORI.

The role of laxatives after elective colorectal surgery is unclear, resulting in heterogenous guidelines and variability in clinical practice. This study aimed to gauge surgeons’ preferences and practice with regard to laxative use following elective colorectal surgery. A short one-minute anonymous web-based questionnaire designed in English and Chinese (Mandarin) using the Research Electronic Data Capture application (REDCap) was distributed to member surgeons of every identifiable international colorectal specialist society via email communication, physical newsletters and social media channels. Frequency of laxative use after elective colorectal surgery, type of laxative used, and, if not used, the reasons for not using laxatives were collected. A total of 852 surgeons, representing 28 surgical societies completed the survey: 80% were colorectal surgeons and 20% were general surgeons with colorectal interest. Twenty-seven percent of the respondents routinely prescribed laxatives after colorectal surgery. There was wide variation in the type of laxatives used, with magnesium-based laxatives (42%), macrogol (Movicol, 36%) and lactulose (Duphalac, 22%) being the most common. Geographical location was correlated with choice of laxative. Those not routinely using laxatives stated the reasons as being no evidence for benefit (48%), potential of adverse events (24%), more than one reason (21%) and other (7%). The majority (93%) non-users would consider using laxatives if better evidence was available. Most surgeons do not routinely prescribe laxatives after elective colorectal surgery due to lack of evidence. Amongst those surgeons who do use them, there is wide variability in the type of laxatives used.

The objective of the research was to study the implementation of Bank Indonesia Regulation No.18/40 / PBI / 2016 onDouble Swipe of Credit Card. The empirical juridical approach method in this researchused primary and secondary data as the main research data, through interviews and literature. A credit card is a credit facility provided by the issuing bank to its customers for transaction. From the research it was found thatin prior to the enactment of Bank Indonesia Regulation No.18/40/PBI/2016 on Payment Transactions Using Credit Cards, there were merchants that still do double swipe on credit card during payment transactions, first in the EDC (Electronic Data Capture) machine and on the cash register machine. However,due to the restriction on double swipe on credit card, this had been reduced. It was also strengthened by a strict regulation in the form of sanctions, reprimands and threats of crime committed by Bank Indonesia to merchants who conduct double swipe on credit card. The mechanism of bank issuing the credit card in giving approval is always different, but the terms and procedures are relatively the same. Legal protection of credit card users occurs when the signing of credit card approval agreement between the issuing bank and users since there is not clear juridical regulation. The problem mostlyarisingregarding the credit cards usage was credit card data scam. The only way to prevent this was through the use of credit cards properly, securely store credit cards when making payment transactions using credit cards, and understand the procedure of using a credit cardinpayment transactions properly. In case of credit card violation, the holder must report to the bank issuing the credit card and Bank Indonesia.

Background Neurologic injury and cognitive disorder after cardiac surgery are associated with morbidity and mortality. Variability in the application of neuroprotective strategies likely exists during cardiac surgery. The Society of Cardiovascular Anesthesiologists (SCA) conducted a survey among its members on common perioperative neuroprotective strategies: assessment of aortic atheromatous burden, management of intraoperative blood pressure, and use of cerebral oximetry. Methods A 15-item survey was developed by 3 members of the SCA Continuous Practice Improvement - Cerebral Protection Working Group. The questionnaire was then circulated among all working group members, adapted, and tested for face validity. On March 26, 2018, the survey was sent to members of the SCA via e-mail using the Research Electronic Data Capture system. Responses were recorded until April 16, 2018. Results Of the 3645 surveys e-mailed, 526 members responded (14.4%). Most responders worked in academic institutions (58.3%), followed by private practices (38.7%). Epiaortic ultrasound for the assessment of aortic atheromatous burden was most commonly utilized at the surgeon's request (46.5%). Cerebral oximetry was most commonly used in patients with increased perioperative risk of cerebral injury (41.4%). Epiaortic ultrasound (1.9%) and cerebral oximetry (5.2%) were rarely part of a standardized monitoring approach. A majority of respondents (52.0%) reported no standardized management strategies for neuroprotection during cardiac surgery at their institution. A total of 55.3% stated that no standardized institutional guidelines were in place for managing a patient's blood pressure intraoperatively or during cardiopulmonary bypass. When asked about patients at risk for postoperative cerebral injury, 41.3% targeted a blood pressure goal >65 mmHg during cardiopulmonary bypass. The majority of responders (60.4%) who had access to institutional rates of postoperative stroke/cerebral injury had standard neuroprotective strategies in place. Conclusions Our data indicate that approximately half of the respondents to this SCA survey do not use standardized guidelines/standard operating procedures for perioperative cerebral protection. The lack of standardized neuroprotective strategies during cardiac surgery may impact postoperative neurologic outcomes. Further investigations are warranted and should assess the association of standardized neuroprotective approaches and postoperative neurological outcomes.

Objective. Evidence to date, while sparse, suggests that patients taking long-term opioids require special considerations and protections to prevent potential iatrogenic harms from opioid de-prescribing, such as increased pain or suffering. Following this study protocol, the EMPOWER study seeks to address multiple unmet needs of patients with chronic pain who desire to reduce long-term opioid therapy, and provide the clinical evidence on effective methodology. Methods. EMPOWER applies patient-centered methods for voluntary prescription opioid reduction conducted within a comprehensive, multi-state, 3-arm randomized controlled comparative effectiveness study of three study arms (1) group cognitive behavioral therapy for chronic pain; (2) group chronic pain self-management; and (3) usual care (taper only). Specialized electronic data capture systems collect patient reported symptoms and satisfaction data weekly and monthly during the taper, with real-time clinical alerts and electronic feedback loops informing, documenting, and steering needed care actions. Conclusion. The EMPOWER study seeks to provide granular evidence on patient response to voluntary opioid tapering, and will provide evidence to inform clinical systems changes, clinical care, patient satisfaction, and patient outcomes for opioid reduction.

Objectives/hypothesis Create a competency-based assessment tool for pediatric esophagoscopy with foreign body removal. Study design Blinded modified Delphi consensus process. Setting Tertiary care center. Methods A list of 25 potential items was sent via the Research Electronic Data Capture database to 66 expert surgeons who perform pediatric esophagoscopy. In the first round, items were rated as "keep" or "remove" and comments were incorporated. In the second round, experts rated the importance of each item on a seven-point Likert scale. Consensus was determined with a goal of 7 to 25 final items. Results The response rate was 38/64 (59.4%) in the first round and returned questionnaires were 100% complete. Experts wanted to "keep" all items and 172 comments were incorporated. Twenty-four task-specific and 7 previously-validated global rating items were distributed in the second round, and the response rate was 53/64 (82.8%) with questionnaires returned 97.5% complete. Of the task-specific items, 9 reached consensus, 7 were near consensus, and 8 did not achieve consensus. For global rating items that were previously validated, 6 reached consensus and 1 was near consensus. Conclusions It is possible to reach consensus about the important steps involved in rigid esophagoscopy with foreign body removal using a modified Delphi consensus technique. These items can now be considered when evaluating trainees during this procedure. This tool may allow trainees to focus on important steps of the procedure and help training programs standardize how trainees are evaluated. Level of evidence 5. Laryngoscope, 131:1168-1174, 2021.

There is a recent convergence of three trends that are transforming behavioral health care: 1) patient engagement and activation; 2) electronic capture of patient-reported outcomes integrated directly into the patients’ electronic health record to be used for measurement-based care; and 3) patient-facing health information technology, centering around patient portals, that empowed patients by providing them access to parts of their medical record. Though each component of this model is currently available; they have yet to achieve widespread standard of care. This paper will discuss general considerations to be explored when implementing electronic capture of patient-reported outcomes and multifunctional patient portals in the context of a general behavioral health clinic. First, it presents strategies for implementing electronic data capture of standard behavioral health measures including the process for selecting instruments, setting technical algorithms for standard patient selection, psychometric considerations, and workflow analysis. Electronic data capture can occur through electronic patient portals, about which there is extensive debate within behavioral health. This paper reviews recent research on allowing patients access to their mental health notes. It also presents some original research on providers’ views of note access and secure messaging. Finally, the paper makes recommendations for both future research and clinical practice. The field would benefit from expanding beyond the single focus on note reading and should explore the potential of patient portals as multicomponent Patient Centered Health Information Technology Homes. These homes can serve as an electronic bridge between clinic and home to help patients achieve their health and wellness goals. The overarching aim of this paper is to provide a vision of how this home might work -as well as its impact on clinical care for people suffering mental disorders.

Objective The purpose of this study was to develop a clinical decision aid for chiropractic management of common conditions causing low back pain (LBP) in veterans receiving treatment in US Veterans Affairs (VA) health care facilities. Methods A consensus study using an online, modified Delphi technique and Research Electronic Data Capture web application was conducted among VA doctors of chiropractic. Investigators reviewed the scientific literature pertaining to diagnosis and treatment of nonsurgical, neuromusculoskeletal LBP. Thirty seed statements summarizing evidence for chiropractic management, a graphical stepped management tool outlining diagnosis-informed treatment approaches, and support materials were then reviewed by an expert advisory committee. Email notifications invited 113 VA chiropractic clinicians to participate as Delphi panelists. Panelists rated the appropriateness of the seed statements and the stepped process on a 1-to-9 scale using the RAND/University of California, Los Angeles methodology. Statements were accepted when both the median rating and 80% of all ratings occurred within the highly appropriate range. Results Thirty-nine panelists (74% male) with a mean (standard deviation) age of 46 (11) years and clinical experience of 17 (11) years participated in the study. Accepted statements addressed included (1) essential components of chiropractic care, (2) treatments for conditions causing or contributing to LBP, (3) spinal manipulation mechanisms, (4) descriptions and mechanisms of commonly used chiropractic interventions, and (5) a graphical stepped clinical management tool. Conclusion This study group produced a chiropractic clinical decision aid for LBP management, which can be used to support evidence-based care decisions for veterans with LBP.

Background Treatment decisions in routine clinical practice are based on reports of clinical trials, which represent highly selected populations. Limited studies reported real-world evidences representing routine clinical practices in patients with renal-cell carcinoma (RCC) in Europe. The aim of this retrospective, noninterventional chart review was to collect data on the treatment landscape for patients with advanced/metastatic RCC in routine clinical practice in a broader patient population in Austria. Patients and Methods Patients with advanced/metastatic RCC receiving systemic treatment between June 2010 and June 2016 across 12 centers in Austria were included. Parameters were entered into an electronic case report form from the participating sites via the application Hermesoft electronic data capture system. Progression-free survival (PFS) and overall survival (OS) were the 2 primary end points. Results The median PFS and OS were 12 months and 44 months, respectively (first-line PFS was 14 months for pazopanib and 13 months for sunitinib; first-line OS was 44 months for pazopanib and 48 months for sunitinib). Factors influencing the OS were sex, with female patients at a significantly higher risk than male patients (hazard ratio = 1.719), Eastern Cooperative Oncology Group performance status > 0 increased the risk twice (hazard ratio = 2.048), and number of metastases > 3 before the first line doubled the risk compared to metastases (hazard ratio = 2.064). Conclusion OS in this retrospective chart review was considerably longer than the previous reports in real-world patients, underlining the benefit of current RCC treatment options in routine clinical practice.