Electronic Data Collection System Research Articles

Association between early pregnancy maternal blood pressure and risk of congenital heart disease in offspring

Objective: To analyze the association between maternal blood pressure and congenital heart disease (CHD) in offspring. Methods: From February 2018 to December 2020, pregnant women who participated in the China birth cohort study in Beijing Obstetrics and Gynecology Hospital, Shenzhen Maternal and Child Healthcare Hospital and Chengdu Women's and Children's Central Hospital were enrolled in this study. The baseline and follow-up information were collected using an electronic data collection system. Stepwise logistic regression model was used to analyze the association between maternal blood pressure including systolic blood pressure (SBP), diastolic blood pressure (DBP), mean arterial pressure (MAP) and pulse pressure difference (PP) in the first trimester of pregnancy and the risk of CHD in the offspring. A restrictive cubic spline curve was used to draw the dose-response curve between maternal blood pressure and CHD. Results: A total of 55 552 participants were included in this study. Of them, 31 038, 15 375 and 9 139 pregnant women were enrolled in Beijing Obstetrics and Gynecology Hospital, Shenzhen Maternal & Child Healthcare Hospital and Chendu Women's and Children's Central Hospital, respecitively. The age of pregnant women was (31.3±4.0) and the incidence of CHD in the offspring was 0.78% (435/55 552). Multivariable logistic regression model analysis showed that the increase of SBP (OR=1.01, 95%CI: 1.00-1.02), DBP (OR=1.01, 95%CI: 1.00-1.03) and MAP (OR=1.02, 95%CI: 1.00-1.03) in the first trimester were significantly associated with the risk of CHD in the offspring. The restrictive cubic spline analysis showed a positive linear association of SBP (Ptotal<0.001; Pnon-liear=0.315), DBP (Ptotal<0.001; Pnon-liear=0.928) and MAP (Ptotal<0.001; Pnon-liear=0.929) with the risk of CHD in the offspring. Conclusion: Maternal SBP, DBP and MAP in the first trimester of pregnancy were positively associated with the risk of CHD in the offspring.

Data mining algorithm in the identification of accounting fraud by smart city information technology

The identification of accounting fraud is an important measure to safeguard the interests of stakeholders and ensure the long-term development of the company. The current traditional methods for identifying accounting fraud rely on manual review and judgment, lacking objectivity and accuracy. In order to improve the accuracy of accounting fraud identification, improve identification efficiency and objectivity, this article combines smart city information technology to conduct in-depth research on data mining algorithms for accounting fraud identification. This article first provides a brief overview of smart cities and information technology, then introduces the basic theory of accounting fraud identification, and finally implements accounting fraud identification through k-means clustering mining algorithm. The data is divided into k clusters, and abnormal clusters are identified by checking the characteristics and attributes of each cluster. Compared with traditional rule-based and pattern based methods, this approach can more flexibly adapt to different types and forms of fraud, and can discover unknown patterns of fraud. In the experiment, this article used electronic data collection, analysis, and retrieval systems on the websites of the Shanghai Stock Exchange and Shenzhen Stock Exchange to collect 641 annual reports and financial characteristics from 62 listed companies that engaged in financial statement fraud and 84 companies that were not reported to have financial statement fraud from 2012 to 2021 as test samples. The results were tested and analyzed from several aspects, including the number of misjudgments, misjudgment rate, and ROC curve. The final test results show that compared to traditional accounting fraud identification methods, the comprehensive misjudgment rate of data mining algorithms based on smart cities has decreased by 3 %. The conclusion indicates that data mining algorithms used in smart city information technology to identify accounting fraud can help improve the accuracy of accounting fraud, improve audit objectivity and effectiveness.

Enhanced passive safety surveillance of high-dose and standard-dose quadrivalent inactivated split-virion influenza vaccines in Germany and Finland during the 2022/23 influenza season

ABSTRACT Enhanced Passive Safety Surveillance (EPSS) was conducted for quadrivalent inactivated split-virion influenza vaccines (IIV4) in Germany (high dose [HD]) and Finland (standard dose [SD]) for the northern hemisphere (NH) 2022/23 influenza season. The primary objective was to assess adverse events following immunization (AEFI) occurring ≤7 days post-vaccination. In each country, the EPSS was conducted at the beginning of the NH influenza season. Exposure information was documented using vaccination cards (VC), and AEFI were reported via an electronic data collection system or telephone. AEFI were assessed by seriousness and age group (Finland only). The vaccinee reporting rate (RR) was calculated as the number of vaccinees reporting ≥ 1 AEFI divided by the total vaccinees. In Germany, among 1041 vaccinees, there were 31 AEFI (ten vaccinees) during follow-up, including one serious AEFI. Of 16 AEFI (six vaccinees) with reported time of onset, 15 occurred ≤7 days post-vaccination (RR 0.58%, 95% confidence interval [CI] 0.21, 1.25), which was lower than the 2021/22 season (RR 1.88%, 95% CI: 1.10, 3.00). In Finland, among 1001 vaccinees, there were 142 AEFI (51 vaccinees) during follow-up, none of which were serious. Of 133 AEFI (48 vaccinees) with time of onset reported, all occurred ≤7 days post-vaccination (RR 4.80%, 95% CI: 3.56, 6.31), which was similar to the 2021/22 season (RR 4.90%, 95% CI: 3.65, 6.43). The EPSS for HD-IIV4 and for SD-IIV4 in the 2022/23 influenza season did not suggest any clinically relevant changes in safety beyond what is known/expected for IIV4s.

Implementation of REDCap mobile app in an oral HIV clinical study

BackgroundIn Peru, HIV cases are highly concentrated among men who have sex with men (MSM). Despite the availability of anti-retroviral therapy, people living with HIV (PWH) have higher levels of oral diseases. Alcohol use disorder (AUD) is significantly present among PWH. Our overarching goal was to generate foundational evidence on the association of AUD and oral health in MSM with HIV and enhance research capacity for future intersectional research on AUD, oral health and HIV. Our specific aim was to implement an on-site electronic data collection system through the use of a REDCap Mobile App in a low-middle income country (LMIC) setting.MethodsFive validated surveys were utilized to gather data on demographics, medical history, HIV status, alcohol use, HIV stigma, perceived oral health status, and dietary supplement use. These surveys were developed in REDCap and deployed with the REDCap Mobile App, which was installed on ten iPads across two medical HIV clinics in Lima, Peru. REDCap app as well as the protocol for data collection were calibrated with feedback from trial participants and clinical research staff to improve clinical efficiency and participant experience.ResultsThe mean age of participants (n = 398) was 35.94 ± 9.13y, of which 98.5% identified as male, and 85.7% identified as homosexual. 78.1% of participants binge drank, and 12.3% reported being heavy drinkers. After pilot testing, significant modifications to the structure and layout of the surveys were performed to improve efficiency and flow. The app was successfully deployed to replace cumbersome paper records and collected data was directly stored in a REDCap database.ConclusionsThe REDCap Mobile App was successfully used due to its ability to: (a) capture and store data offline, (b) timely translate between multiple languages on the mobile app interface, and (c) provide user-friendly interface with low associated costs and ample support.Trial registration1R56DE029639-01.

Electronic aggregated data collection on cervical cancer screening in Bangladesh since 2014: what the data tells us?

IntroductionTo reduce the high prevalence of cervical cancers among the Bangladeshi women, the Government of Bangladesh established a national cervical cancer screening programme in 2005 for women aged 30 to 60 years. The District Health Information System Version 2 (DHIS2) based electronic aggregated data collection system is used since the year 2013. This study summarises data from the year 2014 to 2022 to assess the effectiveness of the electronic data collection system in understanding the outcome of the screening programme.MethodsThis is a descriptive study based on secondary data extracted in MS Excel from the DHIS2-based electronic repository of the national cervical cancer screening programme of Bangladesh. The respondents were women aged 30–60 years, screened for cervical cancer using VIA (Visual Inspection of cervix with Acetic acid) method in 465 government health facilities. The data were collected on the participants’ residential location, month and year of screening, name and type of health facilities performing VIA, and VIA screening results.ResultsThe national screening programme reported a total 3.36 million VIA tests from 465 government hospitals in 8 years (2014 to 2022). The national average VIA-positivity rate was 3.6%, which varied from 1.4 to 9.5% among the districts. This national screening programme witnessed an exponential growth, year after year, with 83.3% increase in VIA test from 2014 to 2022. The primary and the secondary care hospitals were the highest collective contributors of VIA tests (86.2%) and positive cases (77.8%). The VIA-positivity rates in different hospital types varied widely, 7.0% in the medical university hospital, 5.7% in the medical college hospitals, 3.9% in the district/general hospitals, and 3.0% in the upazila health complexes.ConclusionsA national cervical cancer screening programme using VIA method and a DHIS2-based electronic data collection backbone, is effective, sustainable, and useful to understand the screening coverage, VIA positivity rate and geographic distribution of the participants and case load to initiate policy recommendations and actions. Decentralization of the screening programme and more efforts at the primary and secondary care level is required to increase screening performances.

Epidemiological and cost analysis of burned patients in Iran

IntroductionConsidering the financial support provided by insurance and the government for burn patients in Iran, and recognizing the substantial economic impact associated with their treatment, there is a pressing need to delve into the epidemiology of these patients and analyze the related costs. This study aims to explore the epidemiological aspects and hospitalization costs of burn patients specifically within the burn ward of Imam Reza 68-bed Hospital in Mashhad, a regional center of referral in the eastern part of the country. MethodsData had extracted from the electronic data collection system, which is used on a daily basis in the hospital. We included patients with a primary or secondary diagnosis of burns, code T20.0-T32.9 and T95 according to the International Classification of Diseases ICD-10. Ultimately, 1151 patients were included in the study. We analyzed 1151 burn cases in terms of patients’ age at the time of the event, gender, type of burn (Chemical, scalds, flame, electrical and contact burns), anatomical location of the burn (head and neck, upper limb, lower limb, multiple regions and part unspecified), burn etiology, burn degree (I, II, III), total burn surface area (%TBSA), Inpatient ward, expenditure ($), burn mortality rate and length of hospitalization. The age group was divided into seven groups by the 10 years intervals. Statistical analysis of the data was performed using SPSS-16 and Excel software. Results1151 patients were included in the study. High-risk groups are pediatric up to nine (0–9) years. According to age, we found that most cases were children, respectively, 25% (291) cases. Men accounted for 743 cases (65%), women for 408 (35%). Major causes of severe burn injury were flame burns (49%) and scalds (43%). Unspecified was the most common burn location (40%), followed by the multiple regions (23%) and upper limb (11%). In cases of head and neck burns, the financial burden on the patient is elevated compared to other types of burns due to increased expenses for medications, disposable medical instruments, and hoteling. The main items for the burned patients are hoteling (38% of total costs), surgeon (24%), medicine (16%), and medical consumables (6%). The per capita expenditure was $9,365 ± $8,100 in pediatrics and $11,179 ± $10,180 in adults Conclusions: Most cases of death were related to burn in multiple areas of the body and then trunk burn (30% and 19%, respectively) and no death was observed in patients with hand and wrist burn. Burns can be incredibly severe and life-threatening, especially when they affect multiple areas of the body, such as the trunk and any burn injury is still a serious matter. It's important to prioritize fire safety and take precautions to prevent such accidents from happening.

From Snow's map of cholera transmission to dynamic catchment boundary delineation: current front lines in spatial analysis.

The history of mapping infectious diseases dates back to the 19th century when Dr John Snow utilised spatial analysis to pinpoint the source of the 1854 cholera outbreak in London, a ground-breaking work that laid the foundation for modern epidemiology and disease mapping (Newsom, 2006). As technology advanced, so did mapping techniques. In the late 20th century, geographic information systems (GIS) revolutionized disease mapping by enabling researchers to overlay diverse datasets to visualise and analyse complex spatial patterns (Bergquist & Manda 2019; Hashtarkhani et al., 2021). The COVID-19 pandemic showed that disease mapping is particularly valuable for optimising prevention and control strategies of infectious diseases by prioritising geographical targeting interventions and containment strategies (Mohammadi et al., 2021). Today, with the aid of highresolution satellite imagery, geo-referenced electronic data collection systems, real-time data feeds, and sophisticated modelling algorithms, disease mapping has become a feasible and accessible tool for public health officials in tracking, managing, and mitigating the spread of infectious diseases at global, regional and local scales (Hay et al., 2013). [...].

Pediatric injuries classification using openAI: new opportunities for epidemiological surveillance

Abstract Background The burden of unintentional pediatric injuries remains a significant concern for healthcare systems worldwide. Timely and accurate surveillance is critical for injury prevention and resource allocation. However, the diagnosis reported in the emergency department records is often not coded, and the manual coding of these records is labor-intensive, time-consuming, and prone to errors. To implement an automatic coding system using GPT-based models to extract and classify injury data in the Italian language from pediatric emergency department records. Methods The study included 283,468 admission records to the pediatric Emergency Department of Padova University Hospital from 2007 to 2018. Each access is mandatorily registered in an electronic data collection system. For each emergency department access, both coded (administrative and demographic data) and free-text (diagnosis) information are reported. A random subset of 40,030 records underwent classification of free-text diagnosis (as injury or not) by an expert clinician (gold standard). OpenAI was used for the classification task. OpenAI is an extensive language model based on the GPT architecture. Specifically, the GPT-3.5 variant was employed for the present work. openAI was accessed through a public application programming interface (API) using R software. Results Preliminary results showed a classification accuracy of 96.2%. The tool's ability to correctly classify the injuries (sensitivity) was 95%, while the specificity was 96.5%. Conclusions The performance of the classification task was excellent. The present results demonstrate the feasibility of GPT-based models for processing unstructured free text information from medical records. Key messages • OpenAI would represent a promising opportunity to improve pediatric injuries surveillance • OpenAI would improve the classification of unstructured information from medical records

Constraints In The Application of Single Truck Identification Data For Operations At Tanjung Emas Port, Semarang

Single Truck Identification Data is an electronic data collection system for every truck operating at a designated port to support activities at the port. Single Truck Identification Data will later become the single identity of each truck, with an electronic-based system connected to the port management IT system containing a database covering the technical feasibility of trucks and their drivers, including data on truck vehicle police numbers and transportation company owners. However, there are still many trucks and companies that have not registered their companies and have not pocketed a Single Truck Identification Data card; therefore, there are obstacles faced by business actors so that until now they have not registered their companies. The lack of preparation of trucking companies in using the system and the lack of knowledge about the Single Truck Identification Data system are obstacles to implementing the system. The factor of implementing the system is to facilitate the flow of goods at the port. Efforts can be made to reduce existing obstacles by providing socialization and technical guidance to truck drivers and operators, as well as improving services for trucking companies to register their fleets.

Electronic Patient-Reported Outcome Data Collection Systems in Oncology Clinical Trials: A Survey of Clinical Research Professionals (an Alliance Study).

To describe clinical research professionals (CRPs)' experiences with electronic patient-reported outcome (ePRO) data collection systems in oncology clinical trials and identify correlates of CRPs' attitude toward technology. An online survey was conducted among 210 CRPs from 125 National Cancer Institute-funded research sites. Measures included CRPs' demographic characteristics, working years, employment locations, and previous experiences with various types of ePROs. Their attitude toward technology was measured by the Technology Attitude Scale-Adapted. The Wilcoxon signed-rank test was used to compare two subdomains of attitude (perceived usefulness [PU] and perceived ease of use [PEU]). Multiple linear regression was used to explore correlates of (1) overall attitude, (2) PU, and (3) PEU. The significance level was 5%. Participants' median age was 41 years (range, 21-67). Most were female (90%) and White (82%). More than half of the participants had previous experiences with web-based ePROs using patients' own devices (72%) or site-/sponsor-provided on-site devices (eg, kiosks or tablets; 64%). CRPs who were 60 years or older (β = -0.32, P < .05) or worked for 10-20 years (β = -0.11, P < .05) had relatively negative attitudes, controlling for other factors. Previous experiences with more ePRO types were associated with more positive attitudes (β = 0.08, P = .02). Similar correlates were found with PU but not with PEU. This study revealed that CRPs had various experiences with ePRO systems and attitudes toward technology. Age, working years, and previous experiences with ePROs were correlates of overall attitude toward technology and PU. These findings suggest necessary targeted training to facilitate ePRO use in oncology clinical trials by improving CRPs' awareness and attitude toward technology.

Pilot feasibility study of a digital technology approach to the systematic electronic capture of parent-reported data on cognitive and language development in children aged 2 years

BackgroundThe assessment of language and cognition in children at risk of impaired neurodevelopment following neonatal care is a UK standard of care but there is no national, systematic approach for...

A disease registry study to prospectively observe treatment patterns and outcomes in patients with HER2+ unresectable locally advanced or metastatic breast cancer (aBC): Interim results of the ESTHER study (NCT02393924).

e13039 Background: Over the last decade the standard-of-care treatment for patients with HER2+ aBC has included anti-HER2 therapies often combined with chemotherapy. These approaches have shown efficacy in clinical trials which have recruited patients in restricted populations defined by lines of therapy and previous treatments. There are few data regarding the long-term outcomes of patients treated with these regimens, including those with brain metastases. We conducted a prospective, multicentre non-interventional study to observe anti-cancer treatment regimens and clinical outcomes in patients with HER2 positive aBC. Methods: Adult patients diagnosed with HER2-positive aBC within the last 6 months were included. No specific treatment approach or course was mandated by the protocol. Source data was taken from the patient’s chart and other medical records, then reported by means of an electronic data collection system. Data regarding treatment received, efficacy (progression-free and overall survival (PFS), response rates (RR) and development of CNS metastases) and safety (including cardiac toxicity) were captured. Results: Between February 2015 and April 2018, 311 eligible patients were recruited with median age 57 years (24-96). At diagnosis of aBC the most common distant metastatic sites were bone (n = 145;47%), liver (n=117;38%), lung (n=100;32%) and brain (n=21;7%). First line treatment was with pertuzumab (P)/trastuzumab(T)/chemotherapy (n=212;68%), T/chemotherapy (n=45;14%), other T combinations without P (n=19;6%), Trastuzumab Emtansine regimens without T or P (n=16;5%) (19; 5% other combinations). Patients’ status as of cut-off date for this analysis (28th Feb 2022, median follow-up 44.1 months) is shown. The median PFS of patients treated in the 1st, 2nd and 3rd lines was 26.7 months, 10.7 months and 8.6 months. At the time of this analysis an additional 60 patients (19%) had developed brain metastases during first line. The number of patients starting 2nd, 3rd and 4th line treatment with brain metastases were 28 (22%), 17 (40%), 7 (37%) respectively. Conclusions: In routine clinical practice, as reflected by this registry, at least 40% of patients who initiate first line therapy for advanced breast cancer do not proceed to 3rd line therapy, and brain metastases become increasingly common. These findings have implications for selection of optimal 2nd and 3rd line treatment. Clinical trial information: ISRCTN02393924 . [Table: see text]

Digital transformation in higher education: A qualitative evaluative study of a hybrid virtual format using a smart classroom system

This study presents the salient perceptions of students and instructors in a master's program taught in a hybrid virtual format using the pocket Bipolar Laddering tool, a written open-ended electronic data collection system. Perceptions about the hybrid virtual format were tested on the participants of a master's program taught in the 2021–2022 academic year through a hybrid virtual format based on a Smart Classroom system developed as part of the digital innovations implemented to overcome the COVID-19 pandemic restrictions. This work aims to shed light on the users' salient perceptions of the format, detect the positive elements mentioned by the surveyed participants and identify the negative items in a bid to minimize, or even revert, their effects for future editions of the master. As expected, the findings suggest that one of the main advantages of this format is that it allows students who have difficulty attending classes on campus to enroll on courses. However, the participants detected diverse elements that could be improved such as interaction, the degree of socialization, or the technical problems that arose during teaching sessions. It is hoped that these findings will be of use when adjusting new editions of the program and will help to determine the design and implementation of other hybrid virtual programs in the Institution.

Challenges and opportunities of tablet-based electronic performance data collection and feedback system for artificial insemination delivery in dairy cattle: experience from the land O’Lakes Venture37 PAID project in Ethiopia

Land O’Lakes venture37 (v37) has been using Open Data Kit (ODK) to collect Artificial Insemination (AI) technicians’ field performance within the Public Private Partnership for Artificial Insemination Delivery (PAID) Ethiopia Project from Amhara, Oromia, Southern Nations Nationalities Peoples (SNNP), and Tigray regions. This study assesses the challenges and opportunities of the Tablet-based project field performance data collection and feedback system. Information gathered from AI technicians using a structured questionnaire was analyzed using the crosstabulation procedures of SPSS and index methods. Almost all (96.7%) the interviewees had never used Tablet for data collection before PAID project. After training, about 82% of the respondents were able to use the ODK tool to collect and send data to PAID. However, there were reports on the challenges of using ODK that include poor or interruption of internet connectivity (index = 0.272), lengthy (time taking) nature of the forms (index = 0.241), and difficulty of updating the system (index = 0.093). Almost all the respondents were willing to use ODK in the future, provided internet is available and reliable (index = 0.248), and proper training is given (index = 0.238) for using ODK provides confidence that the report is delivered (index = 0.259), and it is timesaving (index = 0.24).

Enhanced passive safety surveillance of high-dose and standard-dose quadrivalent inactivated split-virion influenza vaccines in Germany and Finland during the influenza season 2021/22.

Enhanced passive safety surveillance (EPSS) was conducted for quadrivalent inactivated split-virion influenza vaccines (IIV4) in Germany (high dose [HD], aged ≥60 years) and in Finland (standard dose [SD], aged ≥6months) at the beginning of the northern hemisphere 2021/22 influenza season. The primary objective was to assess adverse drug reactions (ADRs) occurring ≤7days post-vaccination. Vaccinees were issued vaccination cards (VC) and were encouraged to report ADRs via an electronic data collection system or by telephone. ADRs were assessed by frequency, time to onset, intensity and by age group. The vaccinee reporting rate (RR) was calculated as the number of vaccinees reporting ≥1 ADR divided by total vaccinees. Reactogenicity was compared with previous experiences with each vaccine. Among 903 HD-IIV4 vaccinees in Germany, 17 reported ≥1 ADR within ≤7days post-vaccination: RR, 1.88% (95% CI: 1.10, 3.00). Time to onset was known for 53/65 ADRs, all of which occurred ≤7days post-vaccination. In Germany, seven ADRs were reported that were not listed previously. Among the 1000 SD-IIV4 vaccinees in Finland, 49 reported ≥1 ADR within ≤7days post-vaccination: RR, 4.90% (95% CI: 3.65, 6.43). Time to onset was known for 126/134 ADRs, of which 125 occurred ≤7days post-vaccination. In Finland, 21 ADRs were reported that were not listed previously. No ADRs reported during follow-up were serious. The EPSS for HD-IIV4 and for SD-IIV4 in the 2021/22 influenza season did not suggest any clinically relevant changes in safety beyond what is known/expected for IIV4s.

Leveraging routine data in impact evaluation: Understanding data systems in primary healthcare prior to a matched cluster-randomised evaluation of adherence guidelines in South Africa.

An essential part of providing high-quality patient care and a means of efficiently conducting research studies relies upon high-quality routinely collected medical information. To describe the registers, paper records and databases used in a sample of primary healthcare clinics in South Africa (SA) with the view to conduct an impact evaluation using routine data. Between October 2015 and December 2015, we collected information on the presence, quality and completeness of registers, clinical stationery and databases at 24 public health facilities in SA. We describe each register and type of clinical stationery we encountered, their primary uses, and the quality of completion. We also mapped the ideal flow of data through a site to better understand how its data collection works. We identified 13 registers (9 standard, 4 non-standard), 5 types of stationery and 4 databases as sources of medical information within a site. Not all clinics used all the standardised registers, and in those that did, registers were kept in various degrees of completeness: a common problem was inconsistent recording of folder numbers. The quality of patient stationery was generally high, with only the chronic patient record being considered of varied quality. The TIER.Net database had high-quality information on key variables, but national identification (ID) number was incompletely captured (42% complete). Very few evaluation sites used electronic data collection systems for conditions other than HIV/AIDS. Registers, databases and clinical stationery were not implemented or completed consistently across the 24 evaluation sites. For those considering using routinely collected data for research and evaluation purposes, we would recommend a thorough review of clinic data collection systems for both quality and completeness before considering them to be a reliable data source.

A 10-Year Review of Sunburn Injuries Presenting to the Manchester Adult and Paediatric Specialist Burn Services

Background: The incidence of sunburn injuries continues to rise despite increased awareness of the risks of sun exposure and availability of sun protection. Whilst not a significant burden on burns care services, patients remain exposed to associated risks for future development of skin malignancies. The aims of this study were to determine the burden and severity of sunburn injury presentations to the Manchester adult and children’s burns services. Methods: A 10-year retrospective review was performed of patients with sunburn injuries, presenting to the Manchester burn services between 2010 and 2019 (inclusive). Data were collected from the International Burn Injury Database (iBID), electronic patient record (EPR) and local data collection systems. The data extracted included patient demographics, sunburn characteristics and management of the burn injury including need for admission and any documented surgical interventions. Temporal correlation was determined by linear regression analysis. Results: In total, 131 paediatric and 228 adult patients with sunburn injuries were managed by the Manchester burns services over the 10-year period. Mean % total body surface area burned was low (2.00% and 2.12% in adult and paediatric patients, respectively), with the majority of injuries either superficial or superficial partial thickness. Thirty percent (30.2%) of adult and 40.5% of paediatric patients were admitted with a mean length of stay of 3.51 and 1.11 days, respectively. The presentation of sunburn injuries progressively increased over the study period with a peak in 2017 (n = 58). Similar trends in patient demographics, burn size and depth and temporal trends were observed in national data from the same period for both adult and paediatric patients. Conclusion: This 10-year retrospective cohort study demonstrates an increasing trend of sunburn injury presentations to the Manchester specialist burns services; a pattern replicated in national data from England and Wales. The majority of sunburn injuries do not present to specialist burn services; therefore, these reported injuries reflect only a fraction of the true burden of sunburn nationwide. Despite increased awareness, an obvious need for enhanced public awareness campaigns regarding sun protection is therefore needed to address this trend. The educational and preventative role of burns care services is a key component in tackling both consequences of burn injuries themselves and associated risks such as future skin cancer development.

Use of Digital Technology Tools to Characterize Adherence to Prescription-Grade Omega-3 Polyunsaturated Fatty Acid Therapy in Postmyocardial or Hypertriglyceridemic Patients in the DIAPAsOn Study: Prospective Observational Study.

BackgroundMaintaining sustained adherence to medication for optimal management of chronic noninfectious diseases, such as atherosclerotic vascular disease, is a well-documented therapeutic challenge.ObjectiveThe DIAPAsOn study was a 6-month, multicenter prospective observational study in the Russian Federation that examined adherence to a preparation of highly purified omega-3 polyunsaturated fatty acids (Omacor) in 2167 adult patients with a history of recent myocardial infarction or endogenous hypertriglyceridemia.MethodsA feature of DIAPAsOn was the use of a bespoke electronic patient engagement and data collection system to monitor adherence. Adherence was also monitored by enquiry at clinic visits. A full description of the study’s aims and methods has appeared in JMIR Research Protocols.ResultsThe net average reduction from baseline in both total and low-density lipoprotein cholesterol was approximately 1 mmol/L and the net average increase in high-density lipoprotein cholesterol was 0.2 (SD 0.53) mmol/L (P<.001 for all outcomes vs baseline). The mean triglyceride level was 3.0 (SD 1.3) mmol/L at visit 1, 2.0 (SD 0.9) mmol/L at visit 2, and 1.7 (SD 0.7) mmol/L at visit 3 (P<.001 for later visits vs visit 1). The percentage of patients with a triglyceride level <1.7 mmol/L rose from 13.1% (282/2151) at baseline to 54% (1028/1905) at the end of the study. Digital reporting of adherence was registered by 8.3% (180/2167) of patients; average scores indicted poor adherence. However, a clinic-based enquiry suggested high levels of adherence. Data on health-related quality of life accrued from digitally engaged patients identified improvements among patients reporting high adherence to study treatment, but patient numbers were small.ConclusionsThe lipid and lipoprotein findings indicate that Omacor had nominally favorable effects on the blood lipid profile. Less than 10% of patients enrolled in DIAPAsOn used the bespoke digital platform piloted in the study, and the level of self-reported adherence to medication by these patients was also low. Reasons for this low uptake and adherence are unclear. Better adherence was recorded in clinical reports.Trial RegistrationClinicalTrials.gov NCT03415152; https://clinicaltrials.gov/ct2/show/NCT03415152

The Design of a Data Management System for a Multicenter Palliative Care Cohort Study.

Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.

Quality improvement in juvenile idiopathic arthritis: a mixed-methods implementation pilot of the CAPTURE-JIA dataset

BackgroundA significant proportion of children and young people with juvenile idiopathic arthritis (JIA) do not achieve inactive disease during the first two years following diagnosis. Refinements to clinical care pathways have the potential to improve clinical outcomes but a lack of consistent and contemporaneous clinical data presently precludes standard setting and implementation of meaningful quality improvement programmes.This study was the first to pilot clinical data collection and analysis using the CAPTURE-JIA dataset, and to explore patient and clinician-reported feasibility and acceptability data.MethodsA multiphase mixed-methods approach enabled prospective collection of quantitative data to examine the feasibility and efficacy of dataset collection and of qualitative data informing the context and processes of implementation. An initial paper pilot informed the design of a bespoke electronic data collection system (the Agileware system), with a subsequent electronic pilot informing the final CAPTURE-JIA data collection tool.ResultsPaper collection of patient data was feasible but time-consuming in the clinical setting. Phase 1 paper pilot data (121 patients) identified three themes: problematic data items (14/62 data items received >40% missing data), formatting of data collection forms and a clinician-highlighted need for digital data collection, informing Phase 2 electronic data collection tool development. Patients and families were universally supportive of the collection and analysis of anonymised patient data to inform clinical care. No apparent preference for paper / electronic data collection was reported by families.Phase 3 electronic pilot data (38 patients) appeared complete and the system reported to be easy to use. Analysis of the study dataset and a dummy longitudinal dataset confirmed that all eleven JIA national audit questions can be answered using the electronic system.ConclusionsMulticentre CAPTURE-JIA data collection is feasible and acceptable, with a bespoke data collection system highlighted as the most satisfactory solution. The study is informing ongoing work towards a streamlined and flexible national paediatric data collection system to drive quality improvement in clinical care.