Hospital-based Registry Research Articles

Trends of prostate cancer treatment in Ehime Prefecture, Japan: analysis of a hospital-based cancer registry

BackgroundWe previously conducted a retrospective Japanese cohort study of patients who underwent radical prostatectomy (RP) between January 2010 and December 2020 in Ehime Prefecture. This study revealed an increase in the number of RP, but other treatment trends remained unclear. In the current study, we examined prostate cancer treatment in Ehime Prefecture using the hospital-based cancer registry of all designated cancer care hospitals and community cancer care hospitals belonging to the Council of Ehime Cancer Care Hospitals.MethodsTrends of prostate cancer were compared by year according to stage and treatment using data from the hospital-based cancer registry between 2011 and 2020.ResultsThe number of patients with stage 1 disease increased over time, but the proportion of patients with stage 1 disease among all patients decreased from 65.2% in 2012 to 56.9% in 2020. The number of patients with stage 2 disease also increased, but the proportion of such patients among all patients remained constant. Meanwhile, the proportions of patients with stage 3 or 4 disease increased significantly over time, while that of patients undergoing RP increased from 29.2% in 2011 to 45.7% in 2020 (P < 0.001). The proportion of patients receiving radiotherapy (RT) decreased from 25.8% in 2011 to 17.2% in 2020. The use of hormone therapy (HT) remained unchanged, and the proportion of patients undergoing observation fell from 11.0% in 2011 to 7.0% in 2020. A higher proportion of patients with stage 3 cancer received HT, and RT was more frequently used in stage 3 cancer than in stage 1–2 cancer. The use of HT increased with age.ConclusionsThe data highlighted differences in prostate cancer stages and treatment over time. This information could be shared with both urologists and radiologists to improve treatment.

Socioeconomic Factors' Impact on Survivorship in Patients with Cervical Cancer: A Study from the Tertiary Cancer Center in Muzaffarpur, North Bihar, India

ObjectiveTo ascertain the survivorship among cervical cancer patients and the factors responsible for early death. In India, cervical cancer ranks second among cancer-related deaths among women. Estimating the survivability rate of patients with cervical cancer who come to our tertiary cancer care center was imperative, as was figuring out.What was causing the greater death rate.MethodThe present study is a retrospective audit of cervical cancer registered at our hospital-based cancer registry from 2021 till date.ResultThe three-year survival rate among women with late-stage cervical cancer was 45%, while 100% of women with early-stage care were alive at the end of three years. The survival rate was also poor among women belonging to middle and low socioeconomic status and illiterate women.ConclusionAmong women who have cervical cancer, those with early-stage cancer, who are literate and those who belong to above middle socioeconomic status have higher survivorship than their counterparts.

Lessons learned from setting up a hospital-based national registry for venous thromboembolic disorders in India

ABSTRACT Introduction: Health registries are instrumental in tracking trends in the number of people with diseases, monitoring treatment options, and assessing health outcomes. This research examines the challenges of establishing and maintaining a venous thromboembolism (VTE) registry in the Indian context. Methods: A mixed-method approach with purposive sampling was conducted to capture the challenges faced by individuals playing key roles in the establishment and operation of the national registry on VTE. This study focused on 10 questions related to technological infrastructure, resource optimization, data collection and management, coordination and collaboration, regulatory compliance, and political influences and were documented using a semi-structured questionnaire and telephonic interviews. Results: Technological, recruitment, and follow-up challenges were prominently highlighted with issues related to data entry, system glitches, changes to the data entry forms, and potential participant reluctance. Conclusion: Findings from this study highlight the multifaceted challenges experienced during the establishment of a national registry on VTE. By integrating insights from our findings into suggestions, this discussion reflects the specific challenges faced by the research project and offers evidence-based strategies for mitigating these challenges.

Cardiovascular risk factors in poly-vascular vs isolated lower extremity peripheral arterial disease. analysis from the SOLACI peripheral registry

Abstract Introduction Atherosclerotic disease in more than one vascular bed (Polyvascular disease), is a strong independent risk factor for ischemic events and has worse clinical outcomes than those with disease in a single territory. Aims The objective of the present interim analysis is to describe the differences in cardiovascular risk factors and clinical presentation between patients with isolated infra-aortic peripheral artery disease (lower limb: "LL-PAD") and patients with Polyvascular Disease ("PD": simultaneuous coexistence of LL-PAD and affection of at least one more vascular bed) from a cohort of patients undergoing LL endovascular procedures in Latinamerica. Methods Our cohort included patients from The SOLACI Peripheral Registry from March 2021 to February 2024 (a prospective, multi-center, observational, and hospital-based registry of patients with LL- PAD, treated with endovascular interventions across 10 Latin American countries, 42 centers). Patients were considered to have PD if besides LL-PAD, they had a documented history of previous myocardial infarction (MI), coronary revascularization, cerebrovascular, aortic, and/or carotid artery disease. Results A total of 1438 patients were included in the analysis. PD was present in 506 patients(35.1%), of which 225(44.5%) had previous MI; 296(58.5%) previous coronary revascularization;265(52.4%) had aortic and / or carotid disease; and 121(23.9%) had cerebrovascular disease. Patients with PD were older than those with LL-PAD(70.5±9.76 vs 68.6±10.7). PD was more prevalent in men(69.6% vs 62.4%), former smokers(48.2% vs 32.8%), hypertension(92.1% vs 80.5%) and patients with dyslipidemia(75.3% vs 64%). The distribution of treated lesions in the PD group was: 15.4% ilio-femoral; 34 % femoropopliteal; 23.3% infrapopliteal; and 24% had multiple peripheral territories affected and treated at the same time-point. In the LL-PAD group, the distribution of treated lesions was: 12.5% ilio-femoral; 28.6% femoropopliteal; 31.5% infrapopliteal; and 24.8% had multiple peripheral territories affected simultaneously and treated during the same procedure. In general, the lesions were shorter in the PD group: ilio-femoral(53.5±29.2 vs 66.7±48.2mm); femoropopliteal(119±73.6 vs 122±81.7mm); and infrapopliteal(129±83.1 vs 147±93.1mm). In the PD group, a higher percentage of patients were treated with statins and antithrombotic agents: statins (87.5% vs 70.8%), aspirin (91.5% vs 81.1%), clopidogrel (60.9% vs 40.1%), and oral anticoagulants (13.8% vs 6.5%). The use of rivaroxaban was similar in both groups (3.4% vs 3.9%). The PD group had higher intrahospital complication rates: intrahospital death (2.2% vs 0.8%), cardiovascular intrahospital death (1.2% vs 0.4%), MI (0.8% vs 0.1%), stroke (0.4% vs 0%) and bleeding (0.8% vs 0.9%). Conclusions Patients with PD represent a very high-risk population. Systematic screening of multiple vascular beds in patients with LL-PAD may be warranted to prevent worse outcomes.

Does Omega-3 supplementation increase profuse postpartum hemorrhage? A hospital-based register study.

Although Omega-3 is thought to have anticoagulative properties, the potential untoward effects of Omega-3 during pregnancy have not been investigated. No previous studies have been made to specifically assess its effect on postpartum hemorrhage (PPH). Our aim was to determine if an association exists between Omega-3 intake during pregnancy and profuse PPH or massive PPH. Data on all deliveries that occurred at Karolinska University Hospital during the years 2007-2011 (n = 41 139) was collected from the medical record of Obstetrix, maternal health and delivery chart system. Women with reported Omega-3 use in early pregnancy were considered exposed and all other as unexposed. Bivariate and adjusted multivariate analysis was performed on main outcomes. Omega-3 use was associated with 25% increased odds of PPH (adjusted odds ratio (aOR) 1.25, 95% confidence interval [CI] (1.06-1.47)) and a more than doubled odds of massive PPH (aOR 2.36, 95% CI 1.26-4.44). In addition, there was a minor increase in the amount of blood loss. Although few, women on low-dose discontinued terminated at 36th week showed no significant association to blood loss measurements. Our observational findings showed 25% higher odds of PPH and two times higher odds of massive PPH in women who reported using Omega-3 in early pregnancy. Our findings give some support to advocate discontinued use of Omega-3 in late pregnancy.

Impact of the Affordable Care Act and Medicaid Expansion Among Patients With HIV-Associated Aggressive B-Cell Non-Hodgkin Lymphomas.

To study the influence of the Affordable Care Act (ACA) policy and its Medicaid expansion on insurance status and survival in patients with HIV with aggressive lymphoma. We used the National Cancer Database, a hospital-based national registry, to identify adults age 18-64 years with HIV-associated aggressive B-cell non-Hodgkin lymphomas (HIV-a-B-NHLs), diagnosed during 2007 to 2016. Survival analysis was performed on a subset of patients with HIV-a-B-NHL for whom location data were available who resided in Medicaid expansion-adopted and nonadopted states. Using a quasi-experimental difference-in-difference model, the difference in adjusted 2-year survival rates obtained with a flexible parametric Weibull model was compared for states that adopted the Medicaid expansion of ACA against those that did not adopt the expansion. We identified 8,231 patients with HIV-a-B-NHL and 50,650 non-HIV patients with a-B-NHL. We found that a lower proportion of individuals were uninsured at diagnosis in the expansion states compared with nonexpansion states. We also found that the ACA policy adoption led to a reduction in the proportion of uninsured individuals with HIV-a-B-NHL in expansion states of 34.9%, compared with 15.9% in non-expansion-adopted states. There was a statistically significant improvement in the 2-year survival rate among patients with HIV-a-B-NHL in the expansion compared with nonexpansion states with the adoption of ACA (7.17% v 1.58%, P = .02). Using a novel quasi-experimental model, we found that the ACA policy corresponded with a greater survival improvement in patients with HIV-a-B-NHL within Medicaid expansion-adopted states compared with nonexpansion states. We believe that this evidence should be taken into consideration in future policy making.

Intersection of Community Violence and Prenatal Substance Exposure: A Spatiotemporal Analysis.

Maternal substance use during pregnancy is a known risk factor for poor birth outcomes and lifelong health consequences. In addition, exposure to domestic and community violence can be associated with adverse birth outcomes. Due to limited research examining public health challenges linked to prenatal substance exposure (PSE)/neonatal abstinence syndrome (NAS) at the population level, we examined possible geographic and temporal intersections between (1) community violence and PSE/NAS, and (2) community gun violence and PSE/NAS. We conducted a study using abstracted records of neonates born at a tertiary referral hospital from 2012 to 2019 having a diagnosis code for PSE/NAS (n = 1,523). Cases of community violence were identified using a hospital-based Trauma Registry during the 2012 to 2019 period (n = 1,580). We identified zones of spatial clustering and geographic overlap between community violence and PSE/NAS using emerging hot spot analysis. Geographic and temporal clustering of PSE/NAS occurred. PSE/NAS had statistically significant zones of overlap with community assault cases (New Hot Spot 15 zones, Consecutive 5 zones, Sporadic Hot Spot 62 zones with a p < 0.01). PSE/NAS also clustered with community gun violence (New Hot Spot 11 zones, Consecutive Hot Spot 90 zones, Intensifying Hot Spot 13 zones, Sporadic Hot Spot 20 zones with a p < 0.01). Spatiotemporal overlap occurred between community violence and the adverse neonatal event of PSE/NAS. By allocating resources to identified geographic areas of increased risk, the health of vulnerable communities can be improved. · PSE/NAS geographically and temporally clusters with community violence.. · PSE/NAS geographically and temporally clusters with community gun violence.. · Resources should be provided to communities with increased risk.. · By allocating resources, communities members' health can be improved..

Stroke severity and outcomes in patients with intracerebral hemorrhage on anticoagulants and antiplatelet agents: an analysis from the Japan Stroke Data Bank.

Some patients with intracerebral hemorrhage are on antithrombotic agents at the time of the event and these may worsen outcome, but the relative risk of different oral anticoagulants and antiplatelet agents is uncertain. We determined associations between pre-onset intake of antithrombotic agents and initial stroke severity, and outcomes, in patients with intracerebral hemorrhage. Patients with intracerebral hemorrhage admitted within 24 hours after onset between January 2017 and December 2020 and recruited to the Japan Stroke Data Bank, a hospital-based multicenter prospective registry, were included. Enrolled patients were classified into four groups based on the type of antithrombotic agents being used on admission. The outcomes were the National Institutes of Health Stroke Scale (NIHSS) score on admission and modified Rankin Scale (mRS) of 5-6 at discharge. Of a total 9,810 patients with intracerebral hemorrhage (4,267 females; mean age, 70±15 years), 77.1% were classified into the no-antithrombotic group, 13.2% into the antiplatelet group, 4.0% into the warfarin group, and 5.8% into the direct oral anticoagulant (DOAC) group. Median (interquartile range) NIHSS score on admission was 12 (5-22), 13 (5-26), 15 (5-30), and 13 (6-24), respectively, in the four groups. In multivariable analysis, the pre stroke warfarin use was associated with higher NIHSS score (adjusted incidence rate ratio, 1.09 [95%confidence interval (CI), 1.06-1.13], with the no-antithrombotic group as the reference), but the antiplatelet group (1.00 [95%CI, 0.98-1.02]) and DOAC group (0.98 [95%CI, 0.95-1.01]) was not. The rate of mRS 5-6 at discharge was 30.8%, 41.9%, 48.6%, and 41.5%, respectively, in the four groups. In multivariable analysis, pre stroke warfarin use was associated with mRS 5-6 (adjusted odds ratio: 1.90 [95%CI, 1.28-2.81], with the no-antithrombotic group as the reference), but the antiplatelet group (1.12 [95%CI, 0.91-1.37]) and DOAC group (1.25 [95%CI, 0.88-1.77]) was not. Patients who were taking warfarin prior to intracerebral hemorrhage onset suffered more severe intracerebral hemorrhage as evidenced by higher admission NIHSS and higher discharge mRS. In contrast, no increase in severity was seen with antiplatelet agents.

Incidence of Long COVID-19 at 12-18 Months Following Delta Wave of Coronavirus Disease 2019: Hospital-based Prospective Registry.

Long coronavirus disease 2019 (COVID-19) has emerged as an important consequence of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). To identify its incidence 12-18 months following hospitalization in patients with COVID-19, we performed a prospective study. Virologically confirmed successive patients with moderate-to-severe COVID-19, hospitalized during the delta wave in India, were recruited. Data on clinical features, investigations, and outcomes were obtained. Long COVID-19 was diagnosed using the European quality of life questionnaire (EQ-5D) and Birmingham symptom burden questionnaire (SBQ) at 12-18-month follow-up. During the study period (January-July 2021), we evaluated 8,680 suspected COVID-19 patients, of whom 1,641 were confirmed virologically and 388 were hospitalized. Men accounted for 64.4%, individuals aged >60 years for 41.5%, hypertension for 42.8%, diabetes for 38.4%, and cardiovascular disease for 17.3%. At admission, there was a high prevalence of cough (71.1%), fever (86.6%), and oxygen requirement (38.6%). Proning was deployed in 89.2% of cases, nasal cannula in 36.3%, nonrebreather masks in 15.7%, noninvasive ventilation in 14.4%, and invasive ventilation in 16.2%. In-hospital deaths totaled 75 (19.3%), with 310 discharged for home care and eligible for follow-up. At a median follow-up of 15 months, 9 patients had died, 40 were lost to follow-up, and 264 were evaluated. The incidence of Long COVID-19 was 45 [17.0%, 95% confidence of interval (CI) 12.6-21.9%]. The median EQ-5D score was 5.0, with >5 observed in only 11 patients (0.6%). Using the SBQ, new-onset dyspnea on exertion was noted in 13 (4.9%), rest dyspnea in 7 (2.6%), fatigue in 31 (11.7%), feverishness in 18 (6.8%), and low energy in 16 (6.1%). Long COVID-19 was significantly more prevalent in women and older individuals. In Long COVID-19 compared to controls, the mean duration of oxygen requirement (5.46 ± 9.8 vs 2.46 ± 4.5 days, p = 0.002), use of nonrebreather masks (17.8 vs 7.3%, p = 0.026), noninvasive ventilation (11.1 vs 3.2%, p = 0.020), and duration of intensive care unit (ICU) stay (13.5, 8.7-17.3 vs 8.0, 5.0-11.0 days, p = 0.028) were significantly higher. The incidence of Long COVID-19 at 12-18 months follow-up is 17.0%. It is significantly higher in women, older age groups, and patients requiring longer oxygenation, nonrebreather oxygen masks, noninvasive respiratory support, and extended stays in the ICU.

Improving childhood cancer care in South Africa using the Paediatric Oncology Facility Integrated Local Evaluation (PrOFILE) tool

Aim Using the St. Jude Paediatric Oncology Facility Integrated Local Evaluation (PrOFILE) tool, the South African Association of Paediatric Haematology Oncology (SAAPHO) collaborated with St Jude Children’s Research Hospital to evaluate the delivery of health services and provide evidence-based assessments to inform and prioritise action plans to improve childhood cancer care. Methods PrOFILE was used to assess paediatric oncology care in thirteen public-sector hospitals comprehensively. Following that, representatives from each of the thirteen public-sector hospitals and from SAAPHO, the National Department of Health, the World Health Organization, St. Jude Global, and Childhood Cancer Foundation South Africa participated in a national stakeholder prioritisation workshop. Participants were assigned one of the PrOFILE components (Context, Workforce, Diagnostics, Multidisciplinary Team, Therapy, or Patients and Outcomes), forming six working groups to assess, map, and evaluate childhood cancer topics. Using a modified implementation mapping approach and through participation in structured co-designed activities, each group designed multi-level health interventions: prioritising initiatives identified by the SAAPHO, setting goals for each priority, co-designing project-specific logic models, reviewing potential barriers to implementation, and developing a post-workshop agenda. Results Individual hospital reports and a national aggregate report were compiled to discuss opportunities and priorities. The goal of the workshop was to utilise evidence-based assessments to achieve, a) objective assessment data to inform prioritisation exercises conducted by stakeholders, and b) priorities and action plans to inform childhood cancer control activities and demonstrate national organisation, human resources capabilities, and technical support to improve childhood cancer care. Through structured discussion and voting, six priority areas were identified and assigned to working groups: redrafting the organisation’s constitution, standardising multidisciplinary reporting, developing protocols and treatment guidelines, establishing fever-management guidelines, strengthening chemotherapy safety practices, and enhancing hospital-based cancer registries. Conclusions An implementation map enabled stakeholders to develop actionable plans, the success of which is demonstrated by the active implementation of the identified priorities by the focused working groups. This could serve as a model for countries with identified priorities but need more means to implement them. Based on mapping and outputs from the PrOFILE workshop, the NDoH will facilitate the creation of a childhood cancer committee to sustain progress on the key themes and priorities identified through the PrOFILE mapping process.

Carbon-Ion Radiation therapy for Adenocarcinoma of the Uterine Cervix: Clinical Outcomes of a Multicenter Prospective Registry-Based Study in Japan (2016-2020)

Cases of adenocarcinoma of the uterine cervix (AUC) have poorer prognoses than those of squamous cell carcinoma. Carbon-ion radiation therapy (CIRT) outcomes for AUC have been reported in retrospective or single-institutional prospective studies but not prospective multicenter studies. We present the results of CIRT for AUC in a prospective multicenter study using a nationwide hospital-based registry in Japan. Patients with locally advanced untreated AUC who received CIRT at 4 Japanese centers between June 2016 and April 2020 were included in this study. In the absence of organ dysfunction, up to 5 weekly 40 mg/m2 cisplatin courses were administered. The primary endpoints were 2-year overall survival and local control rates. The secondary endpoints were 2-year disease-free survival rate and late adverse events (AEs). Forty-two patients were enrolled with a median age of 54 years (range, 34-76 years). Patients were diagnosed with stage IIB (n = 26), IIIB (n = 12), or IVA (n = 4) disease. The median follow-up period was 24 months. The 2-year overall survival, local control, and disease-free survival rates were 97.5% (95% CI, 92.7%-100.0%), 80.9% (95% CI, 66.9%-94.8%), and 64.3% (48.1%-80.4%), respectively. Two patients developed grade 3 rectum/sigmoid AE. One patient required urinary diversion surgery during a salvage operation for local tumor recurrence (grade 3 genitourinary AE). No other grade 3 or worse toxicities were reported. CIRT is an effective treatment for locally advanced AUC. Further research is required to validate the safety and efficacy of CIRT for AUC.

Hospital Heart Failure Medical Therapy Score and Associated Clinical Outcomes and Costs.

A composite score for guideline-directed medical therapy (GDMT) for patients with heart failure (HF) is associated with increased survival. Whether hospital performance according to a GDMT score is associated with a broader array of clinical outcomes at lower costs is unknown. To evaluate hospital variability in GDMT score at discharge, 90-day risk-standardized clinical outcomes and costs, and associations between hospital GDMT score and clinical outcomes and costs. This was a retrospective cohort study conducted from January 2015 to September 2019. Included for analysis were patients hospitalized for HF with reduced ejection fraction (HFrEF) in the Get With the Guidelines-Heart Failure Registry, a national hospital-based quality improvement registry. Study data were analyzed from July 2022 to April 2023. GDMT score at discharge. Hospital variability in GDMT score, a weighted index from 0 to 1 of GDMT prescribed divided by the number of medications eligible, at discharge was evaluated using a generalized linear mixed model using the hospital as a random effect and quantified with the adjusted median odds ratio (AMOR). Parallel analyses centering on 90-day mortality, HF rehospitalization, mortality or HF rehospitalization, home time, and costs were performed. Costs were assessed from the perspective of the Centers of Medicare & Medicaid Services. Associations between hospital GDMT score and clinical outcomes and costs were evaluated using Spearman coefficients. Among 41 161 patients (median [IQR] age, 78 [71-85] years; 25 546 male [62.1%]) across 360 hospitals, there was significant hospital variability in GDMT score at discharge (AMOR, 1.23; 95% CI, 1.21-1.26), clinical outcomes (mortality AMOR, 1.17; 95% CI, 1.14-1.24; HF rehospitalization AMOR, 1.22; 95% CI, 1.18-1.27; mortality or HF rehospitalization AMOR, 1.21; 95% CI, 1.18-1.26; home time AMOR, 1.07; 95% CI, 1.06-1.10) and costs (AMOR, 1.23; 95% CI, 1.21-1.26). Higher hospital GDMT score was associated with lower hospital mortality (Spearman ρ, -0.22; 95% CI, -0.32 to -0.12; P < .001), lower mortality or HF rehospitalization (Spearman ρ, -0.17; 95% CI, -0.26 to -0.06; P = .002), more home time (Spearman ρ, 0.14; 95% CI, 0.03-0.24; P = .01), and lower cost (Spearman ρ, -0.11; 95% CI, -0.21 to 0; P = .047) but not with HF rehospitalization (Spearman ρ, -0.10; 95% CI, -0.20 to 0; P = .06). Results of this cohort study reveal that hospital variability in GDMT score, clinical outcomes, and costs was significant. Higher GDMT score at discharge was associated with lower mortality, lower mortality or hospitalization, more home time, and lower cost. Efforts to increase health care value should include GDMT optimization.

Hospital-based registries of women with breast cancer from the oncology network of Espírito Santo, Brazil

Objective: To describe the cases of women with breast cancer (BC) and identify the epidemiological profile of the cases reported in the Hospital-based Cancer Registries (HCR) of the Oncological Care Network of Espírito Santo (OCN/ES). Methods: This is a hospital-based descriptive observational study, based on secondary data retrieved via the HCR Tumor Registration Form of the eight hospitals that comprising the OCN/ES, between 2000-2020. Results: There were 16,844 case records of women with breast cancer in this historical series. The median age of the women was 52 years. The age group with the highest number of cases (54.0%) was 41-60 years, 57.42% were brown, 51.70% married, and 30.80% had incomplete elementary school, residents of the Metropolitan region of the state (81.70%). Most cases were analytical (75.42%), referred from SUS (59.70%), had no occurrence of more than one primary tumor (94.21%), the most common histological type was infiltrating duct carcinoma (76.03%), and stage II (6.75%), with multimodal treatments (60.09%). Conclusion: The findings point to an increasing trend in the occurrence of breast cancer over the years in OCN/ES, occurring mainly in older, brown women and women with low education, in stage II of the disease.

Evaluating implementation of a hospital-based cancer registry to improve childhood cancer care in low- and middle-income countries.

Cancer is a leading cause of global childhood mortality, affecting 400,000 children annually. While treatable with modern therapies, children living in low- and middle-income countries (LMICs) have limited access to care and lower survival rates. Hospital-based cancer registries (HBCRs) collect detailed patient information to critically evaluate and evolve care. The St. Jude Global Childhood Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES) is a cloud-based HBCR network facilitating quality data collection of pediatric cancer. Wide variation in the success of implementation has warranted further research into the implementation approach, to create a sustainable and adaptable HBCR in LMICs. Seven of 89 sites using the SJCARES registry were selected, stratified by global region and stage of implementation. Semi-structured interviews were conducted with key groups (clinicians, administrators, data clerks) using an interview guide developed from the Consolidation Framework for Implementation Research (CFIR). Interviews were conducted via a video-telephone software program and transcribed by a transcription service. Transcripts were thematically coded using rapid qualitative analysis. A total of 18 participants (11 clinicians, 4 administrators, 3 data clerks) were interviewed. Several barrier themes were identified, including: difficulty integrating the registry into existing workflow; lack of resources; lack of government or administrative support; and damaged, misplaced, or illegible medical records. Facilitator themes were identified, including: internal support for the registry; clear and extensive training; and dedicated support staff. Interviewed participants identified key barriers and facilitators to the implementation of the SJCARES registry across multiple phases. We plan to use these results to develop targeted implementation strategies including a readiness assessment tool to help guide more successful implementation of the SJCARES registry and other HBCRs in LMICs.

Utilizing injury severity score, Glasgow coma scale, and revised trauma score for trauma-related in-hospital mortality and ICU admission prediction; originated from 7-year results of a nationwide multicenter registry

Objective: During the past few decades, many scoring systems have been developed to evaluate the severity of injury and predict the outcome in trauma patients. This study aimed to assess the capacity of three common trauma scoring systems: injury severity score (ISS), Glasgow coma scale (GCS), and revised trauma score (RTS) in predicting in-hospital mortality and ICU admission in patients with traumatic injury. Methods: This is a multicenter study of the hospital-based national trauma registry of Iran (NTRI), an ongoing registry-based trauma database. This study included trauma cases from 12 major trauma centers throughout the country admitted between July 2016 and November 2023. The inclusion criteria were all patients admitted to the emergency department due to trauma, hospitalized for at least 24 hours, deceased within the first 24 hours of admission, and patients transferred from the intensive care unit (ICU)s of other hospitals. Results: A total of 50,458 traumatic patients, with 38,740 (76.9%) being male, were included in this study. After adjustment for confounders, head, face, and neck injuries were associated with the highest odds of death (OR: 7.51, P-value&lt;0.001), whereas abdominal injuries were associated with the highest odds of ICU admission (OR: 4.58, P-value&lt;0.001). Each Unit increase in RTS score was accompanied by a 61% decrease in odds of death (OR: 0.39, P-value&lt;0.001). The area under the ROC curve for predicting in-hospital mortality was 0.81 (0.79 to 0.82) in ISS, 0.78 (0.77 to 0.80) in GCS, and 0.75 (0.73 to 0.76) in RTS. There was a significant difference between RTS and GCS, as well as RTS and ISS for in-hospital mortality prediction (P-values&lt; 0.001). The area under the ROC curve for the prediction of ICU admission was 0.75 (0.74 to 0.75) in ISS, 0.63 (0.62 to 0.63) in GCS, and 0.62 (0.61 to 0.63) in RTS. There was a statistically significant difference between ISS and GCS, as well as ISS and RTS, for ICU admission prediction (P-value&lt;0.001). Conclusion: ISS is the best predictor of in-hospital mortality and ICU admission, compared to GCS and RTS.

Accuracy Analysis of Topographical and Morphological Code in the RSUP Dr. Sardjito Cancer Registry, Indonesia

In cancer cases, a cancer registry functions as a national cancer control program to analyze cancer severity and risk factors in specific areas, aiming to reduce morbidity and mortality. Accurate coding is essential for producing a high-quality cancer database. This study aims to analyze the accuracy of the cancer registry at RSUP Dr. Sardjito in assigning topography and morphology codes. A mixed-methods approach was employed to evaluate code accuracy and identify factors influencing accuracy and inaccuracy based on the 5M framework. Data were sourced from the Hospital-Based Cancer Registry at RSUP Dr. Sardjito, with a total population of 4500 patients in 2021. A sample of 1000 cancer patients was selected using a simple random sampling technique. Each sample was analyzed as true or false based on verifier notes, revealing that 904 topography codes were accurate (90.40%) and 96 were inaccurate (9.60%). For morphology codes, 913 were accurate (91.30%) and 87 were inaccurate (8.70%). Researchers conducted in-depth interviews with registrars and verifier doctors and observed all cancer registry activities, focusing on topography and morphology codification. Observations and interviews indicated no obstacles in codification activities, but inaccuracies occurred, possibly due to case complexity. In conclusion, the study demonstrates high accuracy in the coding of cancer cases at RSUP Dr. Sardjito. The complexity of cases may contribute to inaccuracies. The study suggests continuous evaluation to enhance coding accuracy, which is crucial for effective cancer control programs.

The observational EURACAN prospective clinical registry dedicated to epithelioid hemangioendothelioma: The protocol of an international and collaborative effort on an ultra-rare entity.

Epithelioid hemangioendothelioma (EHE) is an ultra-rare sarcoma, marked by distinctive molecular and pathological features and with a variable clinical behavior. Its natural history is still partially understood, reliable prognostic and predictive factors are lacking and many questions are still open on the optimal management. In the context of EURACAN, a prospective registry specifically dedicated to EHE was developed and launched with the aim of providing, through high-quality prospective data collection, a better understanding of this disease. Registry-based cohort study including only new cases of patients with a pathological and molecularly confirmed diagnosis of EHE. To improve the understanding of EHE natural history, validate and identify new prognostic and predictive factors, clarify the activity and efficacy of currently available treatment options, describe treatment pattern. Settings and participantsIt is an hospital-based registry established in centers with expertise in EHE including adult patients with a new pathological and molecularly confirmed diagnosis of EHE starting from the 1st December 2023. The characteristics of each patient in the facility who meets the above-mentioned inclusion criteria will be collected prospectively and longitudinally with follow-up at cancer progression and / or cancer relapse or patient death. It is a secondary use of data which will be collected from the clinical records. The data collected for the registry will not entail further examinations or admissions to the facility and/or additional appointments to those normally provided for routine patient follow-up. VariablesFull details on patients and disease features, treatment and outcome will be collected, according to common clinical practice guidelines developed and shared with all the contributing centers. In addition, data on potential confounders (e.g. comorbidity; functional status etc.) will also be collected. Statistical methodsThe data analyses will include descriptive statistics and analytical analyses. Multivariable Cox's proportional hazards model and Hazard ratios (HR) for all-cause or cause-specific mortality will be used to determine independent predictors of overall survival, recurrence and progression. The registry has been joined by 21 sarcoma reference centers across EU and UK, covering 10 countries. Patients' recruitment started in December 2023. The estimated completion date is December 2033 upon agreement on the achievement of all the registry objectives. The already established collaboration and participation of EHE patient's associations involved in the project will help in promoting the registry and fostering accrual.

Trends in Presentation, Management, and Survival of Women With Breast Cancer in a Multiethnic, Middle-Income Asian Setting.

Granular data on breast cancer (BC) are pertinent for surveillance, planning, and monitoring of cancer care delivery. We determined the trends in clinical presentation, management, and survival of women with BC in a multiethnic middle-income Asian setting over 15 years. Data of 7,478 Malaysian women newly diagnosed with invasive BC between 2005 and 2019 from three hospital-based cancer registries were included. Trends in demographic, tumor, and treatment characteristics were compared across period 1 (P1): 2005-2009, period 2 (P2): 2010-2014, and period 3 (P3): 2015-2019. Overall survival and net survival were determined. More women in P3 than P1 were older than 60 years at diagnosis. Only a marginal increase in proportion of women with stage I disease was observed (23.7% v 27.2% in P1 and P3, respectively, P = .004). Nonetheless, patients were increasingly presenting with smaller tumors, fewer axillary node involvement, well-differentiated tumors, and hormone receptor expression in recent times. Proportion of women with human epidermal growth factor receptor 2 (HER2)-overexpressed tumors significantly decreased. Among indicated patients, receipt of anticancer therapies was somewhat similar over the calendar periods, except for neoadjuvant chemotherapy and anti-HER2 therapy, where increases in administration were noted. Significant improvements in survival were observed over the 15 years, particularly for HER2-overexpressed BCs. Although the improvements in BC survival that we have observed validate ongoing cancer control efforts and treatment advances, study findings suggest that more could be done for earlier detection and improved access to effective therapies in our settings.

A scoping review of stroke registers in Sub-Saharan Africa.

Stroke registers are recommended as a key priority by the Lancet Neurology World Stroke Organization Commission for Stroke, 2023, and the African Stroke Leaders' Summit, 2022. This scoping review aims to map where stroke registers have been implemented in Sub-Saharan Africa (SSA). The article then compares and critiques the methods and definitions used and summarizes key results from the registers. The scoping review searched EMBASE, MEDLINE, and CABI Global Health databases and included all studies with a prospective longitudinal design in SSA, where adult acute stroke was the primary condition studied. Articles were screened against inclusion and exclusion criteria independently by two authors. We identified 42 unique stroke registers from 48 individual studies. The registers were located in 19 countries, with 19 from East Africa, 15 West Africa, 6 Central Africa, and 2 from Southern Africa. Cumulatively, the registers recruited 12,345 participants with stroke, the median number of participants was 183 (interquartile range (IQR): 121-312), and the range was 50-1018. Only one study was a population-based register, and 41 were hospital-based registers. Of the hospital-based registers, 29 were single site, 10 were conducted at two sites, and 2 at three sites. Twenty-three (54.7%) of the registers were located in the capital city of their respective country, and only one of the hospital-based registers was in a self-described rural area. Length of recruitment ranged from 4 months to 6 years; the median length of recruitment was 12 months. Methodology and definitions were heterogenous between the registers. Only seven (19.4%) registers referenced the WHO STEPwise approach to implementing stroke registers. Twenty-seven (64.3%) registers used the WHO definition of stroke. The mean neuroimaging rate was 84%, and ranged from 0% to 100%. Stroke severity was measured using the National Institute of Health Stroke Scale (NIHSS) in 22 (52.4%) registers, four registers used the Glasgow Coma Scale (GCS), two registers used the miniNIHSS, one used the Scandinavian Stroke Scale, one modified Rankin Scale (mRS), and 11 registers did not report a stroke severity measure. Seventeen (40.5%) registers used the mRS to measure function, six registers used Barthel Index alone, and three registers used both mRS and Barthel Index. Only two registers included a quality-of-life measure, the EQ-5D. Eight registers included a quality-of-care measure, and 26 (61.9%) registers recorded socioeconomic status or a socioeconomic status proxy, most frequently educational attainment. This scoping review found high heterogeneity of methods and definitions used by stroke registers, with low uptake of the WHO stepwise method of stroke surveillance. A drive to standardize methodology would improve the comparability of stroke data in SSA. The shared use of educational attainment by registers in our review may enable future meta-analyses of inequities in stroke in SSA. Incorporating health-related quality-of-life measures, such as EQ-5D, into stroke registers should be encouraged, bringing a patient perspective, and allow the estimation of quality-adjusted life years lost to stroke. Agreement on a standardized register methodology or further promotion and uptake of the WHO stepwise method is essential to produce comparable data to improve stroke prevention and care.

Implementation research on registering cancer cases in primary health centres of Puducherry through community health workers.

Background & objectives Hospital-based cancer registry does not represent the true burden of cancer in the community. Initiating a Primary Health Centre (PHC)-based cancer registry may better estimate population-level data for cancer cases in an area. This study aimed to set up a system for facilitating a PHC-based cancer registry and to assess the registration status of cancer cases in various PHCs of Puducherry. The facilitating and limiting factors while setting up this registry were also assessed. Methods A quasi-experimental study with an embedded mixed-method design was conducted in 31 PHCs/Community Health Centres (CHCs) from March 2021 to November 2022. The interventions were implemented in all PHCs/CHCs of Puducherry with the involvement of the State Non-Communicable Diseases (NCD) cell. The line list of cancer cases from the Jawaharlal Institute of Postgraduate Medical Education & Research (JIPMER) Hospital-based cancer registry was shared with all PHCs/CHCs. Sensitization sessions for all Community Health Workers (CHWs) were conducted, and feedback on cancer registration status was given to the State NCD cell. Focus group discussion (FGD)/Key informant interview (KII) was undertaken to understand strengths, challenges, and suggestions. The logic model was used to understand the various indicators while setting up this PHC-based cancer registry. Results Over a one-year intervention period, 1270 cancer cases were registered at Puducherry's PHCs/CHCs, 1203 (88%) from the shared list and 67(5%) from other facilities. However, only 53 per cent of the expected living cases were captured in the various PHCs. Major limitations for registration were the COVID-19 pandemic, stigma, inadequate manpower, infrastructure issues, and privacy concerns during screening. Interpretation & conclusions It was feasible to set up a PHC-based cancer registry in all PHCs of Puducherry. However, registration of cancer cases was suboptimal, as population-based screening of cancer cases, as recommended in the National Programme for Prevention & Control of Non-Communicable Diseases (NP-NCD) programme, was weak due to the COVID-19 pandemic. Once this is strengthened, the PHC-based cancer registry will better represent the population.