Capturing the Value of Biomedical Research.

Assessing the real-world impact of biomedical research is notoriously difficult. Here, we present the framework for building a prospective science-centered information system from scratch that has been afforded by the Sidra Medical and Research Center in Qatar. This experiment is part of the global conversation on maximizing returns on research investment.

SH2db, an information system for the SH2 domain.

SH2 domains are key mediators of phosphotyrosine-based signalling, and therapeutic targets for diverse, mostly oncological, disease indications. They have a highly conserved structure with a central beta sheet that divides the binding surface of the protein into two main pockets, responsible for phosphotyrosine binding (pY pocket) and substrate specificity (pY + 3 pocket). In recent years, structural databases have proven to be invaluable resources for the drug discovery community, as they contain highly relevant and up-to-date information on important protein classes. Here, we present SH2db, a comprehensive structural database and webserver for SH2 domain structures. To organize these protein structures efficiently, we introduce (i) a generic residue numbering scheme to enhance the comparability of different SH2 domains, (ii) a structure-based multiple sequence alignment of all 120 human wild-type SH2 domain sequences and their PDB and AlphaFold structures. The aligned sequences and structures can be searched, browsed and downloaded from the online interface of SH2db (http://sh2db.ttk.hu), with functions to conveniently prepare multiple structures into a Pymol session, and to export simple charts on the contents of the database. Our hope is that SH2db can assist researchers in their day-to-day work by becoming a one-stop shop for SH2 domain related research.

Patient-Reported Outcome Measures for Patients With CKD: The Case for Patient-Reported Outcomes Measurement Information System (PROMIS) Tools.

Chronic kidney disease (CKD), kidney failure, and kidney replacement therapies are associated with high symptom burden and impaired health-related quality of life (HRQOL). Symptoms change with disease progression or transition between treatment modalities and frequently go unreported and unmanaged. Tools that reliably monitor symptoms may improve the management of patients with CKD. Patient-reported outcome measures (PROMs) assess symptom severity; physical, psychological, social, and cognitive functioning; treatment-related side effects; and HRQOL. Systematic use of PROMs can improve patient-provider communication, patient satisfaction, clinical outcomes, and HRQOL. Potential barriers to their use include a lack of engagement, response burden, and limited guidance about PROM collection, score interpretation, and workflow integration. Well-defined, acceptable, and effective clinical response pathways are essential for implementing PROMs. PROMs developed by the Patient-Reported Outcomes Measurement Information System (PROMIS) address some challenges and may be suitable for clinical use among patients with CKD. PROMIS tools assess multiple patient-valued, clinically actionable symptoms and functions. They can be administered as fixed-length, customized short forms or computer adaptive tests, offering precise measurement across a range of symptom severities or function levels, tailored questions to individuals, and reduced question burden. Here we provide an overview of the potential use of PROMs in CKD care, with a focus on PROMIS.

Comparison of patient-reported outcomes measurement information system (PROMIS®)-29 and PROMIS global physical and mental health scores.

PURPOSE: The Patient-Reported Outcomes Measurement and Information System (PROMIS®): includes the PROMIS-29 physical and mental health summary and the PROMIS global physical and mental health scores. It is unknown how these scores coincide with one another. This study examines whether the scores yield similar or different information. METHODS: The PROMIS-29 and the PROMIS global health items were administered to 5804 adults from Amazon's Mechanical Turk (MTurk) in 2021-2022 and to 4060 adults in the Ipsos KnowledgePanel (KP) in 2022. RESULTS: The median age of those in MTurk (KP) was 36 (54) and 53% (50%) were male. Mean T-scores on the PROMIS-29 and PROMIS global physical health scales were similar, but PROMIS global mental health was 3-4 points lower than the PROMIS-29 mental health summary score. Product-moment correlations ranged from 0.69 to 0.81 between the PROMIS-29 physical health and PROMIS global physical health scales and 0.56-0.69 between the mental health scales. Multi-trait multimethod analyses indicated that only a small proportion of the correlations between the two methods of measuring mental health were significantly more highly correlated with one another than correlations between physical and mental health. CONCLUSIONS: PROMIS-29 and PROMIS global mental health scales provide different information and, therefore, study conclusions may vary depending on which measure is used. Interpretation of results needs to consider that the PROMIS-29 mental health scale is a weighted combination of specific domains while the PROMIS global mental health scale is based on general mental health perceptions. Further comparisons of methods of assessing mental health are needed.

Lessons learned from urgent computing in Europe: Tackling the COVID-19 pandemic.

PRACE (Partnership for Advanced Computing in Europe), an international not-for-profit association that brings together the five largest European supercomputing centers and involves 26 European countries, has allocated more than half a billion core hours to computer simulations to fight the COVID-19 pandemic. Alongside experiments, these simulations are a pillar of research to assess the risks of different scenarios and investigate mitigation strategies. While the world deals with the subsequent waves of the pandemic, we present a reflection on the use of urgent supercomputing for global societal challenges and crisis management.

Twenty Years of Progress and the Way Forward: Immunization Registry Information System in Korea.

The National Immunization Program in The Republic of Korea offers mandatory and free vaccinations to children under 12, regulated by the Infectious Disease Prevention and Control Act. Tracking vaccination coverage is crucial for population protection and public health strategies. Since 2002, the Immunization Registry Information System (IRIS) has been used nationwide to capture vaccination data. This study reviewed documents related to IRIS's establishment and development. The Republic of Korea legally supports IRIS's construction and data collection, integrating vaccination data with the Ministry of the Interior and Safety's resident registration to minimize errors. This collaboration also facilitates cost reimbursement and digital registration, promoting wider vaccination coverage. IRIS manages expense claims once vaccination details are logged, and authorized medical institutions can access these records in real-time. Since 2015, the Korea Disease Control and Prevention Agency has been compiling annual data on national vaccination coverage. IRIS also sends automated reminders in 12 languages, reports adverse effects, and issues vaccination certificates. However, IRIS lacks integration between vaccine and disease registries, unlike countries such as England, Denmark, and the Netherlands. Improving integration capabilities could enhance IRIS's support for public health through an integrated information system.

Population-Level Surveillance of Domestic Assaults in the Home Using the National Emergency Medical Services Information System (NEMSIS).

Violence in the home, including partner violence, child abuse, and elder abuse, is pervasive in the United States. An informatics approach allowing automated analysis of administrative data to identify domestic assaults and release timely and localized data would assist preventionists to identify geographic and demographic populations of need and design tailored interventions. This study examines the use of an established national dataset, the NEMSIS 2019, as a potential annual automated data source for domestic assault surveillance. An algorithm was used to identify individuals who utilized emergency medical services (EMS) for a physical assault in a private residence (N = 176,931). Descriptive analyses were conducted to define the identified population and disposition of patients. A logistic regression was performed to predict which characteristics were associated with consistent domestic assault identification by the on-scene EMS clinician and dispatcher. The sample was majority female (52.2%), White (44.7%), urban (85.5%), and 21-29 years old (24.4%). A disproportionate number of those found dead on scene were men (74.5%), and female patients more often refused treatment (57.8%) or were treated and then released against medical advice (58.4%). Domestic assaults against children and seniors had higher odds of being consistently identified by both the dispatcher and EMS clinician than those 21-49, and women had lower odds of consistent identification than men. While a more specific field to identify the type of domestic assault (e.g., intimate partner) would help inform specialized intervention planning, these data indicate an opportunity to systematically track domestic assaults in communities and describe population-specific needs.

Benefits and Challenges of Sealing Deceased Individual Immunization Records in Immunization Information Systems (IIS): An Overview of Iowa's Process.

Data cleansing practices aimed to improve data quality in immunization information systems (IIS) continue to be identified and evaluated by immunization programs to generate accurate and reliable immunization coverage rates. The Iowa Immunization Program has implemented several automated, daily data cleansing practices to improve the quality of records in Iowa's Immunization Registry Information System (IRIS), including the process of sealing records of deceased individuals through vital records matching. This process removes deceased individual records from the active IIS population, which helps reduce denominator inflation and improve the accuracy of immunization rate calculations. Other benefits to this process include decreasing record fragmentation, increasing completeness and accuracy of IIS data, improving reminder/recall functionality, and supporting better clinical decision-making for providers. This process is one of multiple practices implemented in IIS to improve data quality and is limited by several factors, including the inability to capture deaths for out-of-state records.

Assessing Fatigue in Patients Receiving Kidney Replacement Therapy Using PROMIS Computer Adaptive Testing.

RATIONALE & OBJECTIVE: Fatigue is a debilitating symptom for many patients receiving kidney replacement therapy (KRT). Patient-reported outcome measures can help clinicians identify and manage fatigue efficiently. We assessed the measurement characteristics of the Patient Reported Outcome Measurement Information System (PROMIS)-Fatigue Computer Adaptive Test (PROMIS-F CAT) in patients receiving KRT using the previously validated Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) questionnaire. STUDY DESIGN: Cross-sectional study. SETTING & PARTICIPANTS: 198 adults treated with dialysis or recipients of a kidney transplant in Toronto, Canada. PREDICTORS: Demographic data, FACIT-F scores, KRT type. OUTCOME: Measurement properties of PROMIS-F CAT T scores. ANALYTICAL APPROACH: Reliability and test-retest reliability were assessed using standard errors of measurement and intraclass correlation coefficient (ICC), respectively. Construct validity was assessed using correlation and comparisons across predefined groups expected to have different levels of fatigue. Receiver operating characteristic (ROC) curves were used to assess the discrimination of PROMIS-F CAT, with clinically relevant fatigue defined by a FACIT-F score of≤30. RESULTS: Of the 198 participants, 57% were male, the mean±SD age was 57±14 years; 65% had received a kidney transplant. Based on the FACIT-F score, 47 patients (24%) had clinically relevant fatigue. PROMIS-F CAT and FACIT-F were strongly correlated (ρ =-0.80, P<0.001). PROMIS-F CAT had excellent reliability (>0.90 for 98% of sample), and good test-retest reliability (ICC=0.85). The ROC analysis demonstrated outstanding discrimination (area under ROC=0.93 [95%, CI 0.89-0.97]). A PROMIS-F CAT cutoff score of≥59 accurately identified most patients with clinically relevant fatigue (sensitivity=0.83; specificity=0.91). LIMITATIONS: A convenience sample of clinically stable patients. FACIT-F items are a part of the PROMIS-F item bank, although there was minimal overlap with only 4 FACIT-F items completed in PROMIS-F CAT. CONCLUSIONS: PROMIS-F CAT has robust measurement properties with low question burden to assess fatigue among patients with KRT.

Incidence and prevalence of generalized pustular psoriasis in multiethnic Johor Bahru, Malaysia: a population-based cohort study using routinely captured electronic health records in the Teleprimary Care (TPC®) clinical information system from 2010 to 2020.

BACKGROUND: There is limited understanding of the epidemiology of generalized pustular psoriasis (GPP) internationally, with no population-based estimates of GPP in South East Asia. OBJECTIVES: To determine the incidence and prevalence of GPP in the Malaysian population and characterize its flares and trigger factors. METHODS: We conducted a population-based cohort study using the Teleprimary Care database between January 2010 and December 2020. We identified 230 dermatologist-confirmed GPP cases using International Classification of Diseases, 10th revision, diagnostic codes. Annual prevalence and incidence rates were stratified by age, sex and ethnicity. We compared data regarding flares and trigger factors for patients with GPP who had associated psoriasis vulgaris (PV) with those who did not have associated PV. RESULTS: The prevalence of GPP was 198 per million (267 women, 127 men) and incidence was 27.2 per million person-years [95% confidence interval (CI) 22.8-31.6]; 35.3 (28.4-42.2) per million person-years for women and 18.3 (13.1-23.5) per million person-years for men. Rates were higher in Chinese individuals [prevalence 271 per million; incidence 41.6 per million person-years (28.9-54.3)] than in the Malay population [prevalence 186; incidence 24.6 (19.4-29.7)] or the Indian ethnic group [prevalence 179; incidence 25.0 (13.8-36.3)]. Annual prevalence was consistently higher in women than in men and highest among the Chinese population, followed by the Indian and Malay populations. Overall, 67% of patients with GPP had associated PV. The prevalence and incidence of GPP without PV were lower than GPP with PV at 66 vs. 132 per million and 19.3 (95% CI 15.6-23.0) vs. 8.0 (95% CI 5.6-10.3) per million person-years, respectively. The mean age at GPP onset was 42.7 years (SD 18.4). A bimodal trend in the age of GPP onset was observed, with first and second peaks at age 20-29 years and age 50-59 years, respectively. Disease onset was significantly earlier in patients with GPP without PV than in those with PV [mean age 37.5 years (SD 20.7) vs. 44.9 years (SD 17.0), P = 0.026]. Flares occurred more frequently in patients without PV than in those with PV [mean number of flares per patient per year was 1.35 (SD 0.77) vs. 1.25 (SD 0.58), P = 0.039]. Common triggers of flares in patients with GPP who did not have PV were infections, pregnancy, menstruation and stress, whereas withdrawal of therapy, particularly systemic corticosteroids, was a more frequent trigger in patients with GPP who also had PV. CONCLUSIONS: Our findings contribute to the global mapping of GPP, which will help inform the management of this rare condition.

Value of a web-based pediatric drug information system to prevent serious adverse drug reactions in child and adolescent psychiatry.

Psychotropic drugs are frequently prescribed 'off-label' to children and adolescents and carry the risk of serious adverse drug reactions (sADR). We examined the frequency of sADRs of psychotropic drugs in pediatric inpatients and explored their potential preventability through following the recommendations of a web-based pediatric drug information system (PDIS). The potential socio-economic impacts of using this online system is also addressed. Routine clinical data from all inpatients treated in a child and adolescent psychiatry department between January 2017 and December 2018 were retrospectively examined for the occurrence of sADRs as defined by the European Medicines Agency. The preventability of the sADRs was assessed based on the information of the PDIS. Furthermore, the expected prolongation of the hospital stay due to sADRs was calculated as well as the associated treatment costs. The study was supported by the Innovation Fund of the Joint Federal Committee, grant number 01NVF16021. In total, 1036 patients were screened of whom 658 (63.5%) received psychopharmacological treatment. In 53 (8.1%) of these patients 54 sADRs were documented, of which 37 sADRs were identified as potentially preventable through PDIS. Mitigating sADR through PDIS would likely have prevented prolonged hospital stays and conferred considerable savings for health insurance companies. PDIS provides systematic and evidence-based information about pediatric psychopharmacotherapy and helps to prevent prescribing errors. Therefore, PDIS is a useful tool to increase drug therapy safety in child and adolescent psychiatry. Further prospective studies are needed to confirm the results.

Validity and reliability of the Patient-Reported Outcomes Measurement Information System (PROMIS®) using computerized adaptive testing in patients with advanced chronic kidney disease.

BACKGROUND: The Patient-Reported Outcomes Measurement Information System (PROMIS®) has been recommended for computerized adaptive testing (CAT) of health-related quality of life. This study compared the content, validity, and reliability of seven PROMIS CATs to the 12-item Short-Form Health Survey (SF-12) in patients with advanced chronic kidney disease. METHODS: Adult patients with chronic kidney disease and an estimated glomerular filtration rate under 30 mL/min/1.73 m2 who were not receiving dialysis treatment completed seven PROMIS CATs (assessing physical function, pain interference, fatigue, sleep disturbance, anxiety, depression, and the ability to participate in social roles and activities), the SF-12, and the PROMIS Pain Intensity single item and Dialysis Symptom Index at inclusion and 2 weeks. A content comparison was performed between PROMIS CATs and the SF-12. Construct validity of PROMIS CATs was assessed using Pearson's correlations. We assessed the test-retest reliability of all patient-reported outcome measures by calculating the intraclass correlation coefficient and minimal detectable change. RESULTS: In total, 207 patients participated in the study. A median of 45 items (10 minutes) were completed for PROMIS CATs. All PROMIS CATs showed evidence of sufficient construct validity. PROMIS CATs, most SF-12 domains and summary scores, and Dialysis Symptom Index showed sufficient test-retest reliability (intraclass correlation coefficient ≥ 0.70). PROMIS CATs had a lower minimal detectable change compared with the SF-12 (range, 5.7-7.4 compared with 11.3-21.7 across domains, respectively). CONCLUSION: PROMIS CATs showed sufficient construct validity and test-retest reliability in patients with advanced chronic kidney disease. PROMIS CATs required more items but showed better reliability than the SF-12. Future research is needed to investigate the feasibility of PROMIS CATs for routine nephrology care.

Psychometric properties and reference values of the Patient-Reported Outcomes Measurement Information System (PROMIS) sleep item banks in the Dutch general population.

Psychometric properties of the v1.0 Patient-Reported Outcomes Measurement Information System (PROMIS®) sleep disturbance (27 items) and sleep-related impairment (SRI; 16 items) item banks, short forms derived from the item bank, and simulated computerised adaptive test (CAT), were assessed in a representative sample of 1,006 adults from the Dutch general population. For sleep disturbance all items fitted the item response theory model. Four items showed differential item functioning (i.e., lack of measurement invariance) for age and two for language but the impact on scores (expressed as T-scores) was small. Reliable scores (r > 0.90) were found for 92.2%-96.3% of respondents with the full bank, short forms with six and eight items, and CAT, but for only 25.6% with the four-item short form. For SRI two items did not fit the item response theory model. Four items showed differential item functioning for language but the impact on T-scores was small. Reliable scores were found for 82.1% with the full bank, for 47.8%-69.5% with short forms and CAT. T-scores of 49.7 and 49.3 represent the average score of the Dutch general population for sleep disturbance and SRI, respectively. In conclusion, sufficient structural validity, reliability, and cross-cultural validity was found for the full banks but short forms of four items are not reliable enough for clinical practice. For SRI we recommend the full item bank if this is the primary outcome.

Comparing Patient-Reported Outcomes Measurement Information System Computer Adaptive Testing With Existing Measures After Operative Interventions for Extremity Fractures.

INTRODUCTION: Patient-Reported Outcomes Measurement Information System (PROMIS) enables the use of computer adaptive testing (CAT). The aim of this prospective cohort study was to compare the most commonly used disease-specific instruments with PROMIS CAT questionnaires in patients with trauma. METHODS: All patients with trauma (ages 18-75) who underwent an operative intervention for an extremity fracture between June 1, 2018, and June 30, 2019, were included. The disease-specific instruments were the Quick Disabilities of the Arm, Shoulder, and Hand for upper extremity fractures and the Lower Extremity Functional Scale (LEFS) for lower extremity fractures. Pearson's correlation (r) between the disease-specific instruments and the PROMIS CAT questionnaires (PROMIS Physical Function, PROMIS Pain Interference, and PROMIS Ability to Participate in Social Roles and Activities) was calculated at week 2, week 6, month 3, and month 6. Construct validity and responsiveness were calculated. RESULTS: A total of 151 patients with an upper extremity fracture and 109 patients with a lower extremity fracture were included. At month 3 and month 6, the correlation was strong between the LEFS and PROMIS Physical Function (r = 0.88 and r = 0.90, respectively), and at month 3, the correlation was strong between the LEFS and PROMIS Social Roles and Activities (r = 0.72). At week 6, month 3, and month 6, there was a strong correlation between the Quick Disabilities of the Arm, Shoulder, and Hand and PROMIS Physical Function (r = 0.74, r = 0.70, and r = 0.76, respectively). CONCLUSIONS: The PROMIS CAT measures are acceptably related to existing non-CAT instruments and may be a useful tool during follow-up after operative interventions for extremity fractures.

Patient-reported outcomes for measuring sleep disturbance in pediatric atopic dermatitis: Cross-sectional study of the Patient Reported Outcomes Measurement Information System pediatric sleep measures and actigraphy.

BACKGROUND: Most children with atopic dermatitis (AD) experience sleep disturbance, but reliable and valid assessment tools are lacking. OBJECTIVES: To test the Patient-Reported Outcomes Measurement Information System (PROMIS) sleep measures in pediatric AD and to develop an algorithm to screen, assess, and intervene to reduce sleep disturbance. METHODS: A cross-sectional study was conducted with children with AD ages 5 to 17 years and 1 parent (n = 61), who completed sleep, itch, and AD-specific questionnaires; clinicians assessed disease severity. All children wore actigraphy watches for a 1-week objective sleep assessment. RESULTS: PROMIS sleep disturbance parent proxy reliability was high (Cronbach α = 0.90) and was differentiated among Patient-Oriented Eczema Measure (POEM)-determined disease severity groups (mean ± standard deviation in mild vs moderate vs severe was 55.7 ± 7.5 vs 59.8 ± 10.8 vs 67.1 ± 9.5; P < .01). Sleep disturbance correlated with itch (numeric rating scale, r = 0.48), PROMIS sleep-related impairment (r = 0.57), and worsened quality of life (Children's Dermatology Life Quality Index, r = 0.58), with all P values less than .01. Positive report on the POEM sleep disturbance question has high sensitivity (95%) for PROMIS parent proxy-reported sleep disturbance (T-score ≥ 60). An algorithm for screening and intervening on sleep disturbance was proposed. LIMITATIONS: This was a local sample. CONCLUSIONS: Sleep disturbance in pediatric AD should be screened using the POEM sleep question, with further assessment using the PROMIS sleep disturbance measure or objective sleep monitoring if needed.

Cross-cultural translation, reliability and validity of the Thai version of the Patient­Reported Outcomes Measurement Information System (PROMIS) Parent Proxy Upper Extremity Short Form 8a in children with congenital upper extremity anomalies.

BACKGROUND: The PROMIS Parent Proxy Upper Extremity Short Form 8a version 2 (PROMIS Parent Proxy UE-SF) is one of the most commonly used self-assessment questionnaires for evaluating function in children with congenital upper extremity anomalies. However, this English questionnaire is difficult for Thai parents to complete. The purpose of this study is to translate the PROMIS Parent Proxy UE-SF into Thai and test its reliability and validity. METHODS: The PROMIS Parent Proxy UE-SF was translated into Thai using FACIT translation methodology. This version and the Thai version of the Michigan Hand Questionnaire (Thai-MHQ) were used to evaluate 30 Thai children with different types of congenital upper extremity anomalies. The reliability and validity of the Thai-PROMIS Parent Proxy UE-SF were evaluated by test-and-retest with the intraclass correlation coefficient (ICC) and Cronbach's alpha coefficient. Correlations between the Thai-PROMIS Parent Proxy UE-SF and Thai-MHQ were analysed by Pearson's correlation coefficients. RESULTS: The children's mean age was 4.47 ± 2.08 years (range 1-9 years). The main diagnoses included thumb duplication (11 children), syndactyly (4 children)4, congenital trigger thumb (3 children) and obstetric brachial plexus palsy (3 children). The children's parents completed the questionnaires, taking 164.23 ± 22.58 s for the Thai-PROMIS and 337.8 ± 49.37 s for the Thai-MHQ. The test-retest reliability of Thai-PROMIS evaluated by ICCs, was 0.9909 (good reliability), and the Cronbach's alpha of all items was 0.923. The Pearson's correlation coefficient between the Thai-PROMIS and Thai-MHQ showed a strong correlation with Domain 2 (activities of daily living, r = 0.7432) and a moderate correlation with the overall Thai-MHQ score (r = 0.699). CONCLUSIONS: The Thai-PROMIS Parent Proxy UE-SF is a valid, reliable and easy-to-use patient-reported outcome measure for assessing function in children with congenital upper extremity anomalies.

Federated electronic data capture (fEDC): Architecture and prototype.

In clinical research as well as patient care, structured documentation of findings is an important task. In many cases, this is achieved by means of electronic case report forms (eCRF) using corresponding information technology systems. To avoid double data entry, eCRF systems can be integrated with electronic health records (EHR). However, when researchers from different institutions collaborate in collecting data, they often use a single joint eCRF system on the Internet. In this case, integration with EHR systems is not possible in most cases due to information security and data protection restrictions. To overcome this shortcoming, we propose a novel architecture for a federated electronic data capture system (fEDC). Four key requirements were identified for fEDC: Definitions of forms have to be available in a reliable and controlled fashion, integration with electronic health record systems must be possible, patient data should be under full local control until they are explicitly transferred for joint analysis, and the system must support data sharing principles accepted by the scientific community for both data model and data captured. With our approach, sites participating in a joint study can run their own instance of an fEDC system that complies with local standards (such as being behind a network firewall) while also being able to benefit from using identical form definitions by sharing metadata in the Operational Data Model (ODM) format published by the Clinical Data Interchange Standards Consortium (CDISC) throughout the collaboration. The fEDC architecture was validated with a working open-source prototype at five German university hospitals. The fEDC architecture provides a novel approach with the potential to significantly improve collaborative data capture: Efforts for data entry are reduced and at the same time, data quality is increased since barriers for integrating with local electronic health record systems are lowered. Further, metadata are shared and patient privacy is ensured at a high level.

Patient-Reported Outcomes Measurement Information System in patients with gastrointestinal cancer: a scoping review.

PURPOSE: The purpose of this study was to identify and evaluate the use of the Patient-Reported Outcomes Measurement Information System in patients with gastrointestinal cancer, as well as provide references for analyzing treatment outcomes, gauging prognostic risk, and assessing clinical symptoms and function in gastrointestinal cancer patients. METHODS: PubMed, Web of Science, ProQuest, Embase, and CINAHL were systematically searched using keywords and controlled vocabulary through January 2023. RESULTS: The scoping review collected 30 studies published from 2012 to 2022, including observational studies (n = 21), interventional studies (n = 4), and mixed studies (n = 5). Outcome indicators included mood, pain, fatigue, sleep, the ability to perform activities of daily living, social functioning, and other health problems. CONCLUSION: Being a self-report questionnaire, the Patient-Reported Outcomes Measurement Information System offers a full assessment of patient's symptoms and quality of life, and accurately captures their actual thoughts, feelings, and experiences. Individuals with gastrointestinal cancer made frequent use of the Patient-Reported Outcomes Measurement Information System to provide an accurate measure of their health status.

Activation and On-Scene Intervals for Severe Trauma EMS Interventions: An Analysis of the NEMSIS Database.

Objective: Time to care is a determinant of trauma patient outcomes, and timely delivery of trauma care to severely injured patients is critical in reducing mortality. Numerous studies have analyzed access to care using prehospital intervals from a Carr et al. meta-analysis of studies from 1975 to 2005. Carr et al.'s research sought to determine national mean activation and on-scene intervals for trauma patients using contemporary emergency medical services (EMS) records. Since the Carr et al. meta-analysis was published, the National Highway Traffic Safety Administration (NHTSA) created and refined the National Emergency Medical Services Information System (NEMSIS) database. We sought to perform a modern analysis of prehospital intervals to establish current standards and temporal patterns.Methods: We utilized NEMSIS to analyze EMS data of trauma patients from 2016 to 2019. The dataset comprises more than 94 million EMS records, which we filtered to select for severe trauma and stratified by type of transport and rurality to calculate mean activation and on-scene intervals. Furthermore, we explored the impact of basic life support (BLS) and advanced life support (ALS) of ground units on activation and on-scene time intervals.Results: Mean activation and on-scene intervals for ground transport were statistically different when stratified by rurality. Urban, suburban, and rural ground activation intervals were 2.60 ± 3.94, 2.88 ± 3.89, and 3.33 ± 4.58 minutes, respectively. On-scene intervals were 15.50 ± 10.46, 17.56 ± 11.27, and 18.07 ± 16.13 minutes, respectively. Mean helicopter transport activation time was 13.75 ± 7.44 minutes and on-scene time was 19.42 ± 16.09 minutes. This analysis provides an empirically defined mean for activation and on-scene times for trauma patients based on transport type and rurality. Results from this analysis proved to be significantly longer than the previous analysis, except for helicopter transport on-scene time. Shorter mean intervals were seen in ALS compared to BLS for activation intervals, however ALS on-scene intervals were marginally longer than BLS.Conclusions: With the increasing sophistication of geospatial technologies employed to analyze access to care, these intervals are the most accurate and up-to-date and should be included in access to care models.

Description of the 2020 NEMSIS Public-Release Research Dataset.

BACKGROUND: The National Emergency Medical Services Information System (NEMSIS) is a federally funded program designed to standardize Emergency Medical Services (EMS) patient care reporting and facilitate state and national data repositories for the assessment and improvement of EMS systems of care. This manuscript characterizes the 2020 submissions to the National EMS Database, detailing the strengths and limitations associated with use of these data for public health surveillance, improving prehospital patient care, critical resource allocation, clinician safety, system quality assurance and research purposes. METHODOLOGY: Using the 2020 NEMSIS Public-Release Research Dataset (NEMSIS dataset), we evaluated the dataset completeness (i.e., presence of missing/null values), dataset content and assessed data generalizability. The analysis focused on 9-1-1 EMS activations resulting in the treatment and transport of a patient, except for out-of-hospital cardiac arrests for which all patients were included regardless of transport status. RESULTS: In 2020, 43,488,767 EMS activations were reported to the National EMS Database by 12,319 agencies serving 50 states and territories. Of the 19,533,036 9-1-1 EMS activations reportedly treating and transporting a patient, the majority were attended by "non-volunteer" clinicians (77%) working in a fire-based EMS agency (35%) certified to offer Advanced Life Support (ALS) Paramedic service (80%) and located in an urban area (82%). 9-1-1 call centers most often dispatched EMS for "sick person" (20%), while EMS clinicians most likely reported asthenia (7%) as the patient's primary symptom as well as the clinician's primary impression (6%), and documented "fall on same level, slip, or trip" as the most common cause of injury (37%). The NEMSIS dataset demonstrates some "missingness" and element inconsistencies, but methods may be employed to mitigate these data limitations. CONCLUSIONS: The National EMS Database is a free and publicly available resource for evaluating EMS system utilization, response, and prehospital patient care. Understanding the characteristics of the underlying dataset and known data limitations will help ensure proper analysis and reporting of research and quality metrics based on nationally standardized NEMSIS data.