Standardized Data Collection Tool Research Articles

Understanding the medication regimens associated with anticholinergic burden in older people's mental health services in the UK.

Medications with anticholinergic properties are associated with a range of adverse effects that tend to be worse in older people. To investigate medication regimens with high anticholinergic burden, prescribed for older adults under the care of mental health services. Clinical audit of prescribing practice, using a standardised data collection tool. Fifty-seven trusts/healthcare organisations submitted data on medicines prescribed for 7915 patients: two-thirds (66%) were prescribed medication with anticholinergic properties, while just under a quarter (23%) had a medication regimen with high anticholinergic burden (total score ≥3 on the anticholinergic effect on cognition (AEC) scale). Some 16% of patients with a diagnosis of dementia or mild cognitive impairment were prescribed medication regimens with a high anticholinergic burden, compared with 35% of those without such diagnoses. A high anticholinergic burden was mostly because of combinations of commonly prescribed psychotropic medications, principally antidepressant and antipsychotic medications with individual AEC scores of 1 or 2. Adults under the care of older people's mental health services are commonly prescribed multiple medications for psychiatric and physical disorders; these medication regimens can have a high anticholinergic burden, often an inadvertent consequence of the co-prescription of medications with modest anticholinergic activity. Prescribers for older adults should assess the anticholinergic burden of medication regimens, assiduously check for adverse anticholinergic effects and consider alternative medications with less anticholinergic effect where indicated. The use of a scale, such as the AEC, which identifies the level of central anticholinergic activity of relevant medications, can be a helpful clinical guide.

Perceptions and Behaviors of Nurses and Physicians During Bedside Rounds in Medical-Surgical Units.

Communication and collaboration among health care professionals during bedside rounds improve patient outcomes and nurses' and physicians' satisfaction. To determine barriers to nurse-physician communication during bedside rounds and identify opportunities to improve nurse-physician collaboration at an academic medical center. A survey with Likert-scale and open-ended questions regarding professional attitudes toward nurse-physician communication was administered to 220 nurses and physicians in medical-surgical units to assess perceptions of participation in bedside rounds. After the survey was given, observational data from 1007 bedside rounds were collected via a standardized data collection tool. Nurses and physicians perceived different barriers to including nurses in bedside rounds. Nurses most often cited being unaware that bedside rounds were occurring (38 of 46 nurses [83%]); physicians most often cited nurse unavailability (43 of 52 physicians [83%]). Of 1007 observed rounds, 602 (60%) involved in-person contact of nurses and physicians; 418 (69%) of the 602 included a conversation between the nurse and physician about the nurse's concerns. Of 355 rounds with no in-person or telephone contact between nurses and physicians, the medicine team did not contact the nurse in 284 (80%). Conversations about nurses' concerns occurred more often after physician-initiated contacts (73% of 369 contacts) and nurse-initiated contacts (74% of 93 contacts) than after chance encounters (57% of 140 contacts). Initiating discussions of care between nurses and physicians and discussing nurses' concerns during bedside rounds have multiple benefits.

Moving beyond "Better Late than Never": High Symptom Burden and Diminished Functional Status at First Palliative Care Visit for Patients with Gynecological Cancers.

Background: Despite physical and emotional distress in patients with gynecologic malignancies, palliative care (PC) is underutilized. Objectives: We characterize referral practices, symptom burden and functional status at the time of initial PC encounter for patients with gynecologic cancer. Design: Data were extracted from the standardized Quality Data Collection Tool for Palliative Care (QDACT-PC). We describe symptom burden and performance status. Results: At initial specialty PC encounter, patients with gynecologic cancers reported a mean of 3.3 moderate/severe symptoms. Outpatients experienced the most moderate/severe symptoms (mean 3.9) versus inpatient (mean 2.1) or home (mean 1.5). A total of 72.7% of patients had significantly impaired functional status (palliative performance scale [PPS] <70) at initial encounter. Inpatients had a more impaired functional status (mean PPS 48.8) than outpatients (mean PPS 67.0). Conclusions: The symptom burden for gynecologic cancer patients at initial PC encounter is high. Despite better functional status, patients referred in the outpatient setting had the highest symptom burden.

Improving Linkages Between Sexual and Reproductive Health and Substance Use Providers: The Partnership to Advance Integrated Referrals.

Women of reproductive age with substance use (SU) disorders have lower rates of contraceptive use and higher rates of unintended pregnancy than women without SU disorders and are less likely to access treatment than men. Integration of SU and sexual and reproductive health (SRH) services, using a model known as Screening, Brief Intervention, and Referral to Treatment (SBIRT), has been proven effective in reducing SU and improving health care equity. The SBIRT model includes screening, brief intervention (a short client-centered conversation providing an opportunity to identify/discuss concerns), and referral to treatment. The purpose of this study was to test whether an established quality improvement (QI) learning collaborative model could be used to support SU and SRH sites in implementing an SBIRT/SBIRT-like model to improve health outcomes for women. Five SRH sites and 4 SU sites across New York State participated in the Partnership to Advance Integrated Referrals (PAIR), an 18-month QI learning collaborative designed and implemented by Public Health Solutions. Six standardized mixed-methods data collection tools were used over 18months to gather process and outcome data from over 130 QI team members and site staff and over 5000 clients. By the end of PAIR, QI team members and site staff showed a reduction in bias, increased knowledge and comfort, increased rating of organizational practices related to client-centered care, and increased access to peer learning, information about best practices, and training and technical assistance. SU sites increased SRH screening from 47.9% in the first quarter of data collection to 67.4% in the final quarter and increased brief interventions from 92.5% in the first quarter to 100.0% in the final quarter. Similarly, SRH sites increased SU screening from 51.6% to 75.6% and increased brief interventions from 81.3% to 85.1%. The processes and outcomes were very different for the SU and SRH sites, and their varying successes and challenges are discussed. Making and verifying referrals remained challenging. The results of PAIR demonstrated the feasibility of SU and SRH sites implementing an SBIRT/SBIRT-like model when supported by a QI learning collaborative. Larger community and organizational challenges (COVID-19, staff turnover) still present barriers to improved reproductive health and SU outcomes for women.

Post-introduction evaluation (PIE) of rotavirus vaccine in India

BackgroundIndia became the first country in the WHO South-East Asia Region (SEAR) to introduce the rotavirus vaccine (RVV) in the Universal immunization programme (UIP) in 2016 with nationwide expansion by 2019. It was a landmark move to reduce the diarrheal disease burden in under-five children. To assess the implementation process of introduction of RVV, Post Introduction Evaluation (PIE) was conducted in March 2022. MethodsThe evaluation was conducted across 14 states, 28 districts and 28 health facilities to obtain a nationwide geographical inclusion. Stakeholders involved in program decision-making, planning, training, vaccine delivery, logistics, and communication from all levels (National, state, district, health facility, health worker, caregiver) were interviewed using standardized data collection tool for PIE (adapted from the standard WHO PIE questionnaire) and scripted on a digital tool. ResultsA total of 260 interviews were conducted. Political willingness, well-planned preparedness activities, securing vaccines timely, strong supply chain monitoring, availability of domestic RVV products, quality trainings and intense communication activities were the key factors identified for the successful RVV introduction. Key activities during the introduction included cold chain space assessment, trainings of healthcare workforce, dissemination of job aids, updation of recording & reporting formats and strengthening of AEFI surveillance. Lack of community awareness for immunization in a few areas, fear of AEFI amongst some caregivers and local issues with Alternate Vaccine Delivery (AVD) were some reported challenges in achieving high coverage for RVV. ConclusionsOverall, the nationwide roll-out of RVV was smooth and the vaccine has been well-accepted in the community. The assessment emphasizes on having a well-strategized operational and communication planning, which is very crucial for any new vaccine introduction.

Spatiotemporal epidemiology of substance-related accidental acute toxicity deaths in Canada from 2016 to 2017

ObjectivesIn Canada, substance-related accidental acute toxicity deaths (AATDs) continue to rise at the national and sub-national levels. However, it is unknown if, where, when, and to what degree AATDs cluster in space, time, and space–time across the country. The objectives of this study were to 1) assess for clusters of AATDs that occurred in Canada during 2016 and 2017 at the national and provincial/territorial (P/T) levels, and 2) examine the substance types detected in AATD cases within each cluster.MethodsTwo years of person-level data on AATDs were abstracted from coroner and medical examiner files using a standardized data collection tool, including the decedent's postal code and municipality information on the places of residence, acute toxicity (AT) event, and death, and the substances detected in the death. Data were combined with Canadian census information to create choropleth maps depicting AATD rates by census division. Spatial scan statistics were used to build Poisson models to identify clusters of high rates (p < 0.05) of AATDs at the national and P/T levels in space, time, and space–time over the study period. AATD cases within clusters were further examined for substance types most present in each cluster.ResultsEight clusters in five regions of Canada at the national level and 24 clusters in 15 regions at the P/T level were identified, highlighting where AATDs occurred at far higher rates than the rest of the country. The risk ratios of identified clusters ranged from 1.28 to 9.62. Substances detected in clusters varied by region and time, however, opioids, stimulants, and alcohol were typically the most commonly detected substances within clusters.ConclusionOur findings are the first in Canada to reveal the geographic disparities in AATDs at national and P/T levels using spatial scan statistics. Rates associated with substance types within each cluster highlight which substance types were most detected in the identified regions. Findings may be used to guide intervention/program planning and provide a picture of the 2016 and 2017 context that can be used for comparisons of the geographic distribution of AATDs and substances with different time periods.

Development and Validation of the Saudi Telehealth Acceptance Scale Based on the Unified Theory of Acceptance and Use of Technology.

Telehealth is in early stages in the Kingdom of Saudi Arabia (KSA). Identifying barriers to using telehealth is an essential step prior to its implementation; however, no theoretically based scales exist for the same purpose. To design a theory-based scale capable of measuring telehealth users' perceptions of benefits, barriers, and social influence in the KSA. The Saudi Telehealth Acceptance Scale (STAS) was constructed based on the Unified Theory of Acceptance and Use of Technology and its content validity was determined by eight experts using the modified Delphi process. Only items with a content validity index score of ≥0.83 were chosen. Finally, the face validity of the questionnaire for healthcare professionals, which was in English, was determined by eight healthcare professionals, and for the patient version, which was in Arabic, by six patients. Initially, 37 items were identified; however, after Round 1, 29 items remained and after Round 2, 24 items were included in the STAS for both healthcare professionals and patients. In the healthcare professionals scale, there were 7 performance expectancy (PE) items, 6 effort expectancy (EE) items, 3 social influence (SI) items, 4 facilitating conditions (FC) items, and 4 behavioral intention (BI) items, while in the scale for patients, there were 9 PE items, 4 EE items, 3 SI items, 4 FC items, and 4 BI items. The two new scales showed evidence of content and face validity. The significance of the two scales is that they were both designed in the context of the healthcare system in the KSA and could provide standardized data collection tools to measure the acceptance of telehealth among HCPs and patients.

Effectiveness of vitamin A supplementation among children under 5 years old in Kazakhstan

Micronutrient sufficiency leads to high rates of morbidity and mortality among children in Kazakhstan. Kazakhstan does not have a program for mandatory vitamin A supplementation of children under 5 years of age. Thus, the aim of this study was to assess the effectiveness of a pilot vitamin A supplementation program among children in Kazakhstan with the ultimate goal of informing future vitamin supplementation efforts. In Akmola and Kostanay regions of Kazakhstan, 529 children (aged 6-59 months) were randomly selected in each region through the local policlinics. In the first step of the study, mothers of the children were surveyed about the health status of their children using a standard data collection tool. Children were supplemented with Vitamin A using oral at a dose of 100,000 IU for children aged 6-11 months and 200,000 IU for children aged 12-59 months. Blood serum samples were collected for determining Vitamin A status. In the second step of the study, mothers were interviewed again about the health status of their children 6 months after the intervention and blood serum samples were collected to assess the efficacy of Vitamin A supplementation program. The number of self reported diarrhea cases and other intestinal infections significantly decreased after the vitamin A supplementation. The number of children with normal level of Vitamin A signficantly increased from before to after the intervention. Data from all participants (n = 529; pre VAS and 501 post VAS) showed that mean serum retinol levels increased significantly post VAS from 30.01 ±0.5 µg/dL to 61.06 ±1.2 µg/dL (p &lt;0.001) Likewise, a significant change was observed in the cases of reported diarrhea between pre-test and post-test assessments (30 vs. 95; p &lt;0.01). The health status of the examined children in the Akmola and Kostanay regions had significantly improved after the vitamin A supplementation and it points to the necessity of implementing Vitamin A supplementation program on the national level. This study has important policy implications for recommending the supplementation program on the national scale.

Implementation of an antibiotic resistance surveillance tool in Madagascar, the TSARA project: a prospective, observational, multicentre, hospital-based study protocol

IntroductionAntimicrobial resistance (AMR) has become a significant public health threat. Without any interventions, it has been modelled that AMR will account for an estimated 10 million deaths annually by 2050,...

Unpacking unstructured data: A pilot study on extracting insights from neuropathological reports of Parkinson's Disease patients using large language models.

The aim of this study was to make unstructured neuropathological data, located in the NeuroBioBank (NBB), follow Findability, Accessibility, Interoperability, and Reusability principles and investigate the potential of large language models (LLMs) in wrangling unstructured neuropathological reports. By making the currently inconsistent and disparate data findable, our overarching goal was to enhance research output and speed. The NBB catalog currently includes information from medical records, interview results, and neuropathological reports. These reports contain crucial information necessary for conducting an in-depth analysis of NBB data but have multiple formats that vary across different NBB biorepositories and change over time. In this study, we focused on a subset of 822 donors with Parkinson's disease (PD) from seven NBB biorepositories. We developed a data model with combined Brain Region and Pathological Findings data at its core. This approach made it easier to build an extraction pipeline and was flexible enough to convert resulting data to Common Data Elements, a standardized data collection tool used by the neuroscience community to improve consistency and facilitate data sharing across studies. This pilot study demonstrated the potential of LLMs in structuring unstructured neuropathological reports of PD patients available in the NBB. The pipeline enabled successful extraction of detailed tissue-level (microscopic) and gross anatomical (macroscopic) observations, along with staging information from pathology reports, with extraction quality comparable to manual curation results. To our knowledge, this is the first attempt to automatically standardize neuropathological information at this scale. The collected data have the potential to serve as a valuable resource for PD researchers, facilitating integration with clinical information and genetic data (such as genome-wide genotyping and whole-genome sequencing) available through the NBB, thereby enabling a more comprehensive understanding of the disease.

Long-term physical and psychological symptoms in Syrian men subjected to detention, conflict-related sexual violence and torture: cohort study of self-reported symptom evolution

Since March 2011, more than 1 million people, mostly men, have been arrested, detained, and tortured by the Assad regime. Published literature does not reflect the evolution of symptoms after male sexual and physical violence in detention. This cohort study examines the constellation and evolution of self-reported symptoms after male conflict-related sexual violence (CRSV) in Syrian state detention. Sexual, psychological, and physical symptoms and conditions experienced by a cohort of 106 male detainees after CRSV in Syrian regime detention were evaluated over a ten-year period (2012-2022). Men sought forensic medical expert evaluations (FMEs) to document torture and later consented to semi-structured interviews (SSIs), a median of 8.8 years after their detention. A standard data collection tool was used to assess symptoms and conditions during FMEs (Time 3), and at the time of the SSI (Time 4), during which men also reported symptoms experienced during detention (Time 1) and after detention release (Time 2). 30.2% of men spent more than 1 year in detention and 9.4% were detained >5 years. 90% reported being slapped, punched, kicked, hit with objects, 60.4% of men reported torture with multiple devices, and 48.1% reported being burned or electrocuted. Multiple sexual violence types were reported during detention: 97.2% forced nudity, 45.3% violence to genitals or anus, 30.2% collective sexual humiliation, and 9.4% rape. Men recalled nearly universal presence of acute pain, bleeding wounds, skin infections, sleep disturbances, fear, sadness, anxiety, and despair during detention. By Time 4, acute physical and psychological conditions were fading or absent, while scars, avoidance, intrusive memories, lack of trust, self-isolation, chronic pain, anger, and low self-esteem were reported by≥50%. The most persistently reported symptoms following detention through the SSI included scars, pain, intrusive memories, and avoidance in ≥50% of men. At the SSI, 26.4% of men reported erectile dysfunction and 23.6% challenges with sexual relations. Men reported persistent symptoms and conditions years after CRSV, torture and detention. The unique constellation of findings and their evolution in male CRSV survivors, particularly increasing rates of anger, distrust, and self-isolation, must urgently inform design and delivery of support services and health care. This study was funded by the United Kingdom Foreign Commonwealth and Development Office and the Arts and Humanities Research Council through the project 'Understanding and Addressing the Impact of Invisibility on Conflict-Related Male Sexual Violence in Syria'.

Factors Associated with Short-Term Surgical Outcomes Among Women Presenting with Pelvic Peritonitis at Bugando Medical Centre Mwanza, Tanzania.

Pelvic peritonitis is a rarely reported pathological condition in literature and emergency laparotomies are a common surgical procedure performed for these conditions in developing countries. This study was designed to investigate factors that are associated with short-term surgical outcomes among women with pelvic peritonitis. The study included retrospective and prospective data obtained between November 2021 and May 2022 from Bugando Medical Centre (BMC). Standardized data collection tool was used to capture clinical, surgical and laboratory data. Descriptive data analysis was done using STATA version 13. A total of 101 participants were recruited; 22 prospectively and 79 retrospectively. The median age was 29[Interquartile range (IQR) 24 to 35] years. Majority (76.2%) of participants were referred patients. Obstetric related peritonitis 82.2% (83/101) was the most frequently detected with a necrotic and or dehiscent lower uterine segment (LUS) that necessitated a subtotal abdominal hysterectomy (STAH) being the commonest (40.8%) intraoperative finding. Postoperative complications were reported in 36.7% (36/98) and were significantly associated with pulse rates >100b/min (P=.041) and platelets <150 × 103 mm3 (P=.049). The median length of hospital stay was 19[IQR: 7 to 35] days and temperature >37.5°C (aOR=5.08, 95% CI 1.23-20.97, P=.025) independently predicted prolonged hospital stay. Death occurred in 9.2% of patients and having ASA score of 5 (P=.045) was associated with death. Multi-drug resistant (MDR) gram-negative bacteria (85.2%) were the predominant pathogens causing pelvic peritonitis. A significant proportion of patients with pelvic peritonitis and deranged sepsis markers develop short-term surgical complications with a significant number of those with fever stay more than 14 days. There is a need of timely complete sepsis work up of the patients with pelvic peritonitis to ensure appropriate management is instituted to prevent associated morbidity and mortality.

Impact of technology interventions on technology sensitive dispensing errors

Abstract Introduction Technology has the potential to impact significantly on dispensing error rates. Technology systems are already widely established in UK hospitals such as automated dispensing systems (robots) and electronic prescribing systems. A single technology system cannot achieve error reduction across all dispensing error types, for example, using a robot can only have impact on picking (contents) errors and not labelling errors. Quantifying the technology sensitive errors after implementation of technology systems enables us to focus on the highest risk error types and combine the most useful risk reduction strategies1. Aim To quantify the technology sensitive error rate found in dispensed items after different technological interventions. Methods Prevented dispensing errors were collected at the Royal Cornwall Hospital in 2021 over four days. Errors were documented at the final checking stage of dispensing on a standardised data collection tool used as part of the hospital usual governance processes. Errors were categorised by error type and the technology interventions involved in the dispensing process; robot picked, robot picked and labelled, or entered by barcode. An error was defined as technology sensitive if that technology could have had a direct impact on that error type2. Data was analysed in Excel. Chi-square significance testing was undertaken on those cohorts that were sized appropriately. Ethics approval was not required as the study met the definition of a service evaluation. Results 2461 items were dispensed in the study period. The overall dispensing error rate for the period was 2.64% (N=65). Labelling errors represented 66.9% of errors whereas contents errors 33.1%. The overall difference in the error rate in items picked by the robot versus manually was not significant. However, when excluding errors that are not sensitive to the technology e.g., label direction errors, the results become significant with a reduction of 0.86% (manually picked) to 0.05% (robot picked). Items that were entered into the stock control system by barcode showed a technology sensitive error reduction of 0.31% to 0%. It was significant that items that were packed down were associated with more dispensing errors (4.37%) compared with those dispensed as original packs (1.14%). Due to small sample size, the reduction in technology sensitive error rate from 0.34%-0.2% when using robotic labelling with robotic picking could not be tested for significance. Discussion/Conclusion Translation of medication orders from a prescription to a stock control system is one of the highest risk areas for error substantiated by labelling errors contributing to 66.9% of the overall errors in this study. A study has demonstrated significant reduction in dispensing error rate using integrated prescribing systems and stock control systems1. This study and previous work found bar-coded data entry to be similarly effective3. Part pack, manual dispensing shows the greatest risk of dispensing errors and therefore technologies that can impact in this area would likely have great benefit. The study was limited by sample size in some of the technology cohorts. With the correct combination of technologies we aim to reduce errors at the point of dispensing to negligible levels.

Exploring near miss errors associated with split-pack robotic dispensing

Abstract Introduction Pharmacy automation using dispensing robots for the supply of medicines is not new. Improved dispensing efficiencies, maximised storage capacity and reduced dispensing errors are cited as key benefits.1 Published articles describe the impact of automation on dispensing error rates and types for original-pack dispensing2 with a paucity of literature on split-packs. Split-pack dispensing cannot be entirely eradicated: the ability to barcode and return to the robot facilitates the storage of medicines locally where dispensary footprint is limited; a manual process and one that is subject to human error. With anecdotal reports of split-pack robotic dispensing errors, there is an opportunity to explore near-miss errors as part of routine monitoring undertaken. Aim To establish the incidence and type of near-miss dispensing errors associated with split-pack robotic dispensing. Methods Approval was obtained from the Trust Pharmacy Research Committee. The need for ethical submission was waived. Near-miss dispensing errors were recorded in real-time via direct observations using a standardised data collection tool adapted from the Royal Pharmaceutical Society Near Miss Error Log3; with additional data collected on whether prescription requests were for original or split-pack quantities and storage location. All drugs dispensed/ checked in the dispensary between 09:00-17:00 were included (4 days in January 2023). All prescription types for individual patient medication orders were included. Stock drugs and outpatient prescriptions were excluded. A manual count of all items dispensed/ checked was undertaken each day to provide the denominator. Data was entered into Microsoft excel and analysed. Results Overall near-miss dispensing error incidence of 3.5% (72 near-misses/ 2035 items dispensed). Fourteen of fifty-eight (24.1%) erroneously dispensed items had two near-misses identified. Near-miss incidence associated with original-pack dispensing of 3.1% (50 near-misses/ 1590 items dispensed) compared with split-pack dispensing of 4.9% (22 near-misses/ 445 items dispensed). Chi square (with Yate’s correction) did not identify a statistical significant difference between the overall near-miss error rate between the two (p&amp;gt; 0.06). Most common original-pack dispensing error types were ‘wrong instructions on label’ (n=29/50), ‘wrong quantity on label and dispensed’ (n= 6/50), and ‘missing label’ on item (n=5/50). For split-pack dispensing, ‘wrong instructions on label’ (n=9/22), ‘wrong quantity dispensed’ (n=8/22), and ‘wrong quantity labelled’ (n=5/22) were most common. Discussion/Conclusion Local prevalence of near-misses is higher than in reported published literature1. Whilst direct comparisons are difficult to make due to differences in research methods, definitions, and operating systems; the incidence of near-miss errors associated with split-packs was notably higher than original-pack dispensing despite no statistical difference. Similar near-miss error types were identified for original/ split-pack dispensing with ‘wrong instructions on the label’ being the most common. This is consistent with published literature1 on errors with pharmacy automation. With split-pack robotic dispensing, it was noted that the quantity were not always as identified on the barcode label due to the manual returns process. Direct observations have indicated that missing patient information leaflets are a common problem for split-pack dispensing, although not recorded in this study. Further work should focus on causes/ contributory factors to split-pack robotic dispensing errors.

Implementation of a Standardized Data Collection Tool for Febrile Episodes in Childhood Cancer Patients in Central America and the Caribbean

Abstract Fever is a common sign of infection and is associated with morbidity and treatment delay in childhood cancer patients. A multinational group of physicians identified the need to develop standardized measures to assess and intervene in the quality of care delivery as measured by adherence to the fever management guidelines published by this group in 2020. Our objective was to create an implement a febrile neutropenia registry that included data for quality assessment. Six sites in Central America and the Caribbean implemented a prototype of a Fever Registry for standardized data collection. Variables collected in the registry included demographic information and quality measures like the performance of selected laboratory tests (neutrophil count and blood culture) and time to antibiotic administration. Sites also collected clinical outcomes, including infection diagnosis, microbiologic diagnosis, critical care support requirements, length of hospital stay, and mortality. The initial implementation cohort included one dedicated pediatric oncology center and five oncology services situated within general pediatric hospitals. From September 9, 2021 to December 5, 2022, the six sites contributed 188 fever episodes from 148 unique patients. The maximum number of fever episodes entered for a single patient was 6 episodes. The distribution of cases entered in the database by site ranged between 5 to 54 cases (average patients enrolled per site=25). 84.9% of iCRFs(Case Report forms) had complete data. The most common incomplete data fields were: Initial antimicrobial administered (9/175=5.1%), nutritional status (6/181=3.3%), and was urinalysis performed at onset of fever (6/181=3.3%). Implementation strategies were developed incorporating responses to a survey based on the Consolidated Framework for Implementation Research. Infectious diseases specialists, who were the site leads, directed the implementation efforts at each site. The coordinating team encouraged sites to incorporate hematologists/oncologists and data managers as part of the team. However, team composition and internal meeting frequency were at the discretion of the site leads. Every site elected to use a paper data collection tool to facilitate centralized data entry, which was conducted by a data manager in all but one site. Staff at local sites received two initial trainings and a retraining by St. Jude staff to identify eligible patients and complete data fields appropriately. Group meetings with all site leads were conducted monthly to review progress and challenges and for quality assurance. The challenges most cited were personnel limitations for data collection and data entry. Surges exacerbated these challenges in caseloads related to respiratory illnesses, including SARS-CoV-2, influenza, and RSV. Conclusion: This group has created and implemented a tool to facilitate standardized data collection for a common clinical problem. Implementation challenges highlight the role of human resources and simplifying data collection to minimize data entry time. Current efforts include developing interim reports so clinicians can use data to improve the quality of care delivery in real-time. The group is also revising data fields to remove data points that are often unavailable or unnecessary to measure care quality. Project implementation in these six sites exposed opportunities to streamline the data collection system and optimize the implementation process.

Trends in Invasive Orthopedic Interventions in Patients with Hemophilia Enrolled in the Community Counts Program (2015-2021)

Background Recurrent joint bleeding due to hemophilia often leads to the development of chronic joint disease resulting in chronic pain, decreased joint function and a significant decline in quality of life. Invasive orthopedic interventions (IOI) such as arthroplasty and arthrodesis for end stage joint disease have historically been pursued to decrease pain and improve joint function especially in patients with severe hemophilia and joint disease. Using data collected on patients receiving care in a large network of hemophilia treatment centers in the United States (USHTCN), Tobase et al have previously reported a 5.6% decline in all IOI in patients with hemophilia during the period 2000-2010 (1). Aims The primary objective of the current analysis was to extend those findings using similar data collected during the period 2015-2021 with a focus on IOI indicative of end stage joint disease such as arthrodesis and arthroplasty. Data on IOI were collected annually during the period 2015-2021 from patients who participated in the Community Counts (CC) surveillance project at the 147 member USHTCN using standardized data collection tools. The proportion of patients having IOI in each year was calculated by dividing the total number of patients who reported an IOI by the total number of patients who had a CC visit in that year. Trends in proportions were plotted over time and assessed for statistical significance using the Cochran-Armitage trend test. Results In total, 8,378 CC patients with a diagnosis of hemophilia A or B, over the age of 2 years who completed a subsequent CC visit within last 12 months of last surveillance visit during the years 2015-2021 were included in this study. Enrollees reported a total of 28 arthrodesis and 168 arthroplasty procedures during a total of 21,082 clinic visits over the entire study period. We found that arthroplasty represented 42.6 %, 68.8%, 17.9%, 26.3%, and 7.4% of all procedures reported in the knee, hip, ankle, shoulder, and elbow, respectively (Figure 1). The rate of IOI during the study timeframe remained very low, with only 2.4% of all participants reporting an IOI. During 2015-2021 there was a statistically significant decline in IOI among all patients &amp;gt;=60 years of age (0.59% in 2015 vs. 0.27% in 2021) (p=0.0325) (Figure 2). Similarly, patients with severe hemophilia regardless of age experienced a significant decline in invasive procedures during the study period (1.69% in 2015 vs. 0.88% in 2021) (p=0.021). Conclusions The rates of IOI reported during the years 2015-2021 remained very low (~2.4%). This suggests less joint morbidity and a continued decline in the rates of end stage joint disease during the study period, likely due, at least in part, to improved therapy and early adoption of preventative factor replacement protocols.

The Importance of Race and Ethnicity Data in Cardiovascular Health Research.

The COVID-19 pandemic has underscored the importance of addressing race and ethnic disparities in healthcare worldwide. In Canada, however, the lack of consistent capture of race and ethnicity data has hindered a comprehensive understanding of these potential disparities. This article explores the importance of and current progress in collecting race and ethnic data in Canada and provides examples of its importance in cardiovascular health outcomes. We believe that a successful implementation of standardized data collection tools on race and ethnicity data will shape evidence-based policies to minimize health disparities in Canada in the future.

Caregivers’ Experiences With a Web- and Mobile-Based Platform for Children With Medical Complexity and the Role of a Live Platform Coach: Thematic Analysis

Background Children with medical complexity (CMC) are individuals with complex chronic conditions who have substantial health care needs, functional limitations, and significant use of health care. By nature of their health status, they have many care providers across multiple settings, making information sharing critical to their health and safety. Connecting2gether (C2), a web- and mobile-based patient-facing platform, was codeveloped with families to support and empower parental caregivers, improve information sharing, and facilitate care delivery. C2 also provided a live platform coach to conduct parental feedback and coaching sessions, which included answering questions, providing advice on usage, and addressing technological issues. Objective This study was conducted to understand the experience of parental caregivers using the C2 platform and the role of the live platform coach. This study is a subset of a larger study assessing the feasibility of C2 in the care of CMC. Methods Parental caregivers (n=33) participated in biweekly sessions to provide feedback and receive real-time platform use support from a trained research team member acting as a live platform coach. Parental caregivers were asked about the utility and usability of C2’s features. Questions, platform issues, and feedback were recorded on a standardized electronic data collection tool. A thematic analysis was performed to analyze parental comments, and codes were categorized into key themes. The number of comments corresponding with each code was quantified. Results A total of 166 parental feedback and coaching sessions were conducted, with an average of 5 sessions per parental caregiver (range 1-7). There were 33 (85%) parental caregivers that participated in at least one coaching session. Technical issues and difficulties navigating C2 were addressed in real time during the sessions to encourage platform engagement. Four key themes were identified: (1) live platform coach, (2) barriers to platform usage and technical challenges, (3) platform requests and modifications, and (4) parent partnership and empowerment. Conclusions Parental caregivers describe C2 as a valuable tool, acting as a facilitator for enhanced care coordination and communication. Parental caregiver feedback showed that the live platform coach was a critical tool in educating on platform use and addressing technological concerns. Further study of the use of the C2 platform and its role in the care of CMC is needed to understand the possible benefits and cost-effectiveness of this technology.

#5529 RED BLOOD CELL TRANSFUSION RATES IN THE INTERNATIONAL DOPPS PROGRAM (2012–2022): HEMODIALYSIS, PERITONEAL DIALYSIS, AND NON-DIALYSIS CKD POPULATIONS

Abstract Background and Aims Anemia is a common complication of chronic kidney disease (CKD), and affects the majority of patients on hemodialysis (HD) and peritoneal dialysis (PD). Consequences of anemia include lower quality of life, increased healthcare utilization, and greater mortality risk. Current international guidelines recommend treating patients with iron and erythropoiesis-stimulating agents (ESAs) to a target hemoglobin (Hb) range, and avoiding red blood cell transfusions (RBCT) when possible, given the associated short- and long-term adverse consequences including hyperkalemia and allosensitization. A description of contemporary RBCT rates – after the 2012 KDIGO guideline changes – across the spectrum of CKD and different geographies is lacking. In this analysis, we estimated RBCT rates in non-dialysis CKD (ND-CKD), PD, and HD patients in a multinational setting, overall and stratified by Hb levels. Method We used data from 3 ongoing prospective cohort studies from the Dialysis Outcomes and Practice Patterns Study (DOPPS) Program: 2443 Stage 3–4 ND-CKD patients from 2 countries in CKDopps phases 1–2 (2013–2022), 3557 PD patients from 6 countries in PDOPPS phase 1 (2014–2018), and 22,771 HD patients from 20 countries in DOPPS phases 5–7 (2012–2022). Within each study, patients were randomly selected from stratified national samples of clinics, representative of a snapshot in time at study entry. Prospective information on RBCT receipt (yes/no) was captured at the patient-month level; thus, multiple events per patient were considered in the rate calculation, if they occurred in different months. RBCT rates were calculated as a count of the total patient-months with an RBCT event divided by the total patient-months with RBCT data available. Rates (per patient-month) were converted to per 100 patient-years, with 95% confidence intervals estimated by Poisson regression. RBCT rates are presented in each population (ND-CKD, PD, HD) across strata of interest, including CKD stage, country/region, and baseline Hb levels. Results Mean age (years) of the cohort was 68.6 for ND-CKD, 59.1 for PD, and 63.2 for HD. Mean (std dev) baseline Hb levels (g/dL) were 12.1 (1.9) in ND-CKD compared to 10.9 (1.7) in PD and 10.9 (1.5) in HD. Median [IQR] months of follow up (with RBCT data available) was 17 [6, 27] for ND-CKD, 16 [9, 20] for PD, and 8 [4, 19] for HD. Table 1 shows crude RBCT rates (per 100 patient-years) in the ND-CKD, PD, and HD populations, overall, by CKD stage and country/region. For ND-CKD, the RBCT rate was 6.7 (95% CI: 5.9, 7.6) overall, including 7.0 in the US and 5.5 in Brazil. RBCT rates increased with ND-CKD stage, from 2.2 in Stage 3a to 4.5 in Stage 3b to 8.5 in Stage 4. For PD, the RBCT rate was 20.3 (95% CI: 19.1, 21.6), higher than in ND-CKD, with substantial variation across countries, from 7.3 in the UK to 45.6 in Thailand. For HD, the RBCT rate was 23.9 (95% CI: 23.3, 24.5), also higher than in ND-CKD, with international variation observed. In the HD cohort, RBCT rates were lower in China (6.3) compared to the US (21.9), Canada (34.4), and the Gulf Cooperation Council region (34.8). Within HD-Europe, RBCT rates were highest in Belgium (48.1) and Sweden (42.4), and lowest in Germany (15.4), France (19.0), and Italy (20.4). Table 2 shows crude RBCT rates by baseline Hb levels. In all 3 cohorts (ND-CKD, PD, HD), RBCT rates appeared higher among patients with lower versus higher baseline Hb levels. In the PD and HD populations, patients with baseline Hb &amp;lt;8 g/dL had RBCT rates &amp;gt;100. Conclusion Our multinational study used uniform and standardized data collection tools, procedures, and processes to estimate RBCT rates in the post-2012 era following the revision of international guidelines. As expected, we observed higher RBCT rates in the PD and HD (vs. ND-CKD) populations, and higher RBCT rates among patients with lower baseline Hb levels. Interestingly, we also observed substantial international variation in RBCT rates in all 3 cohorts (ND-CKD, PD, HD). Further research is needed to better understand the reasons why RBCT use is higher or lower in certain countries, and to investigate predisposing and modifiable risk factors for RBCT. Funding: GSK (study 218930)

Palliative medicine referral trends by demographics for patients with stage IV cancer at an urban safety net hospital.

e18541 Background: Multiple randomized trials have shown that early referral to palliative clinic improves quality of life and has survival advantages when combined concurrently with standard oncology care in patients with advanced cancer. We reviewed data referral trend data for stage 4 cancer patients at an urban safety net hospital with the goal of characterizing demographic factors that may be associated with the amount of time both to referral and to the patient establishing care with palliative medicine in order to identify possible barriers to care. Methods: We identified patients with stage IV cancer seen in our oncology clinic from 2017-2020 using tumor registry cancer staging. We conducted a retrospective chart review of these patients. Demographic data were collected through chart review using a standardized data collection tool. We calculated data using relative frequency. Results: A total of 249 patients with Stage IV cancer were identified during this timeframe. Of these, 137 patients (55%) were referred to palliative clinic. This included 77 male and 60 female patients. The average time between the patient’s first oncology visit and a referral made to the palliative clinic was 187 days, with much higher referral time for female patients (279 days). The referral relative frequency was high among African American and Asian population of 1.46 and 1.20, respectively; with highest rate of 2.14 for African American women. Patients identifying as African and Hispanic had the lowest relative referral frequency, with 0.29 and 0.77, respectively. The average number of days between referral made and first palliative appointment was 41 days, with longer delay in female patients (54 days). The time to first appointment relative frequency was high among Asian population (4.04) and low among African (0.36) and Hispanics (0.63). Patients with Medicaid and those who were uninsured were referred to palliative clinic sooner with average of 121 days and 109 days respectively, as opposed to patients with private insurance (387 days). The appointment relative frequency was also earlier for uninsured and Medicare patients of 0.60 and 0.92, respectively. Conclusions: Our study shows that there is delay in getting palliative care referrals and appointments among African American and Asian population, and female patients. This can be due to cultural and systemic barriers: palliative care is a newer field, with a broader community understanding of its purpose and benefits still growing in many patient populations. We can improve the gap with patient-oriented targeting the identified subgroups who demonstrated more opportunity. The study also highlights more expeditious care for patients with Medicare and uninsured patients, as opposed to private insurance. These early referrals may be due to higher psychosocial needs and clinical requests for help from the palliative interdisciplinary team.