National Bariatric Surgery Registries: an International Comparison

Abstract Introduction Pooling population-based data from all national bariatric registries may provide international real-world evidence for outcomes that will help establish a universal standard of care, provided that the same variables and definitions are used. Therefore, this study aims to assess the concordance of variables across national registries to identify which outcomes can be used for international collaborations. Methods All 18 countries with a national bariatric registry who contributed to The International Federation for the Surgery of Obesity and Metabolic Disorders (IFSO) Global Registry report 2019 were requested to share their data dictionary by email. The primary outcome was the percentage of perfect agreement for variables by domain: patient, prior bariatric history, screening, operation, complication, and follow-up. Perfect agreement was defined as 100% concordance, meaning that the variable was registered with the same definition across all registries. Secondary outcomes were defined as variables having “substantial agreement” (75–99.9%) and “moderate agreement” (50–74.9%) across registries. Results Eleven registries responded and had a total of 2585 recorded variables that were grouped into 250 variables measuring the same concept. A total of 25 (10%) variables have a perfect agreement across all domains: 3 (18.75%) for the patient domain, 0 (0.0%) for prior bariatric history, 5 (8.2%) for screening, 6 (11.8%) for operation, 5 (8.8%) for complications, and 6 (11.8%) for follow-up. Furthermore, 28 (11.2%) variables have substantial agreement and 59 (23.6%) variables have moderate agreement across registries. Conclusion There is limited uniform agreement in variables across national bariatric registries. Further alignment and uniformity in collected variables are required to enable future international collaborations and comparison. Graphical abstract

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Glioma patterns of care in Victoria from 1998–2000

Journal of Clinical Oncology ◽

10.1200/jco.2006.24.18_suppl.11521 ◽

2006 ◽

Vol 24 (18_suppl) ◽

pp. 11521-11521

Author(s):

M. Rosenthal ◽

K. Drummond ◽

M. Dally ◽

M. Murphy ◽

L. Cher ◽

...

Keyword(s):

Clinical Trial ◽

Multidisciplinary Approach ◽

Standard Of Care ◽

The Elderly ◽

Population Based ◽

Histologic Diagnosis ◽

Patient Demographics ◽

Areas Of Concern ◽

Adult Glioma

11521 Background: The management of Gliomas is complex and requires a multidisciplinary approach. The care of such patients (pts) may be variable. The State of Victoria has a population of approximately 4 million people and over 300 new glioma cases diagnosed annually. Methods: This was a retrospective cohort study conducted by surveying doctors involved in managing incident adult glioma cases identified from the population based Victorian Cancer Registry during 1998–2000. The survey was conducted in 2004–5 obtaining at least four years follow-up data on all pts. Results: 828 pts were considered eligible for this study. 264 pts (32%) were aged over 70 years and 92 (11%) were aged over 80 years. 105 (13%) did not have a histologic diagnosis and 473 (57%) had glioblastoma multiforme (GBM). Complete macroscopic resection was performed in 209 pts (25%). Of all pts with a glioma, 612 (74%) and 326 (54%) were referred at initial diagnosis for consideration of radiotherapy and chemotherapy respectively. In 473 pts with GBM, 406 (86%) and 147 (31%) pts were initially referred for consideration of radiotherapy and chemotherapy respectively. Only 39 pts(5%) were enrolled on a clinical trial. The median survival for pts with a GBM was 7.4 months with a 3% five-year survival. Conclusions: This is one of the largest ever-reported glioma management surveys. Much of the patient demographics and approach to treatment were expected and represent a reasonable “standard of care”. Importantly, this study emphasises the elderly nature of this patient population and identifies areas of concern including: absence of histologic diagnosis, lack of multi-disciplinary care and low clinical trial enrolment. No significant financial relationships to disclose.

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Treatment and Cost of Hepatocellular Carcinoma: A Population-Based Cohort Study in Taiwan

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph15122655 ◽

2018 ◽

Vol 15 (12) ◽

pp. 2655 ◽

Cited By ~ 3

Author(s):

Seng-Howe Nguang ◽

Cheng-Kun Wu ◽

Chih-Ming Liang ◽

Wei-Chen Tai ◽

Shih-Cheng Yang ◽

...

Keyword(s):

Hepatocellular Carcinoma ◽

Healthcare System ◽

Healthcare Delivery ◽

Healthcare Services ◽

Population Based ◽

Research Database ◽

Liver Transplants ◽

Total Cost ◽

Real World Evidence

Hepatitis B virus vaccination and antiviral therapies reduce the risk of hepatocellular carcinoma (HCC). However, the lifetime healthcare expenditure involved in caring for HCC patients remains unclear. We examined the use and direct costs of healthcare services for a cohort of HCC patients to the healthcare system using Taiwan national health insurance program research database between 1997 and 2012. Total medical cost for all reimbursed patient encounters, including hospitalizations and outpatient care was cumulated from HCC onset to the end of follow-up or death. The mean follow-up time was 2.7 years (standard deviation, SD = 3.3) for the entire HCC cohort. Insurance payments of approximately US$92 million were made to 5522 HCC patients, with a mean cost of US$16,711 per patient (21,350). On average, the total cost per patient per month was US$2143 (5184); it was 50% higher for advanced cirrhosis patients at the baseline but 23% lower for mild-to-moderate cirrhotic patients. In the two-part regression, patients’ underlying comorbid conditions, liver transplants, hepatectomy, and transarterial chemoembolization were associated with increased total cost, with liver transplants having the greatest impact over time. Hepatocellular carcinoma imposes substantial burden on the healthcare system. Real-world evidence on treatment and cost outcomes highlighted the needs to expand effective screening strategies and to optimize healthcare delivery to meet HCC patients’ clinical needs.

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Interpreting and reporting fracture classification and operation type in hip fracture

The Bone & Joint Journal ◽

10.1302/0301-620x.101b10.bjj-2019-0213.r1 ◽

2019 ◽

Vol 101-B (10) ◽

pp. 1292-1299 ◽

Cited By ~ 2

Author(s):

James Masters ◽

David Metcalfe ◽

Nick R. Parsons ◽

Juul Achten ◽

Xavier L. Griffin ◽

...

Keyword(s):

Hip Fracture ◽

Subtrochanteric Fracture ◽

Classification Systems ◽

Fracture Classification ◽

Substantial Agreement ◽

Perfect Agreement ◽

Moderate Agreement ◽

Extracapsular Fracture ◽

Hip Trauma ◽

Reported Data

Aims This study explores data quality in operation type and fracture classification recorded as part of a large research study and a national audit with an independent review. Patients and Methods At 17 centres, an expert surgeon reviewed a randomly selected subset of cases from their centre with regard to fracture classification using the AO system and type of operation performed. Agreement for these variables was then compared with the data collected during conduct of the World Hip Trauma Evaluation (WHiTE) cohort study. Both types of surgery and fracture classification were collapsed to identify the level of detail of reporting that achieved meaningful agreement. In the National Hip Fracture Database (NHFD), the types of operation and fracture classification were explored to identify the proportion of “highly improbable” combinations. Results The records were reviewed for 903 cases. Agreement for the subtypes of extracapsular fracture was poor; most centres achieved no better than “fair” agreement. When the classification was collapsed to a single option for “extracapsular” fracture, only four centres failed to have at least “moderate” agreement. There was only “moderate” agreement for the subtypes of intracapsular fracture, which improved to “substantial” when collapsed to “intracapsular”. Subtrochanteric fracture types were well reported with “substantial” agreement. There was near “perfect” agreement for internal fixation procedures. “Perfect” or “substantial” agreement was achieved when the type of arthroplasty surgery was reported at the level of “hemiarthroplasty” and “total hip replacement”. When reviewing data submitted to the NHFD, a minimum of 5.2% of cases contained “highly improbable” procedures for the stated fracture classification. Conclusion The complexity of collecting fracture classification data at a national scale compromises the accuracy with which detailed classification systems can be reported. Data around type of surgery performed show similar tendencies. Data capture, reporting, and interpretation in future studies must take this into account. Cite this article: Bone Joint J 2019;101-B:1292–1299

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Real world evidence of the association between medication and life expectancy in elderly inflammatory bowel disease: a population-based cohort study

BMC Gastroenterology ◽

10.1186/s12876-021-02083-y ◽

2022 ◽

Vol 22 (1) ◽

Author(s):

M. Ellen Kuenzig ◽

Douglas G. Manuel ◽

Jessy Donelle ◽

Eric I. Benchimol

Keyword(s):

Older Adults ◽

Inflammatory Bowel Disease ◽

Life Expectancy ◽

Combination Therapy ◽

Bowel Disease ◽

Population Based ◽

Real World Evidence ◽

Inflammatory Bowel ◽

Biologic Monotherapy

Abstract Background Life expectancy in people with inflammatory bowel disease (IBD) has increased but remains shorter than in people without IBD. We describe the life expectancy associated with IBD therapies among the growing number of older adults living with IBD. Methods Older adults (≥ 65 years) with IBD were identified from population-based health administrative data using a validated algorithm. Life expectancy on patients’ 65th birthday, stratified by sex, was calculated using a period life table approach from age- and sex-specific mortality rates among patients receiving immunomodulator monotherapy, biologic monotherapy, combination therapy, mesalamine, systemic steroids, and no therapy. Results Among 28,260 older adults with IBD (239,125 person-years of follow-up), life expectancy at 65 years was longest for patients taking mesalamine (females: 22.1 years, 95% CI 21.8–22.5; males: 19.6 years, 95% CI 19.3–20.0) and shortest for patients taking steroids (females: 11.7 years, 95% CI 11.0–12.4; males 10.3 years, 95% CI 9.7–10.8). Life expectancy was similar for patients receiving immunomodulator monotherapy and biologic monotherapy. Immunomodulator monotherapy was associated with a reduction in life expectancy compared to combination therapy by 5.1 (95% CI 2.3–7.8) in females and 2.8 years (95% CI 0.1–5.5) in males. Conclusions Life expectancy varies across therapies used for IBD, with differences likely arising from a combination of medication effectiveness, safety profiles, disease severity, and comorbid conditions. These considerations should be balanced when deciding on a therapeutic approach for the management of IBD in older adults.

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The Finnish Twin Cohort Study: An Update

Twin Research and Human Genetics ◽

10.1017/thg.2012.142 ◽

2013 ◽

Vol 16 (1) ◽

pp. 157-162 ◽

Cited By ~ 92

Author(s):

Jaakko Kaprio

Keyword(s):

Cohort Study ◽

Data Collection ◽

Longitudinal Data ◽

Population Based ◽

Data Sets ◽

Omics Data ◽

International Collaborations ◽

Data Collections ◽

Adult Twins

In 2002 and 2006, review papers have described the Finnish Twin Cohort and studies conducted on these population-based, longitudinal data sets with extensive follow-up data. Three cohorts have been established: the older twin cohort in the 1970s, and the Finntwin12 and Finntwin16 studies initiated in the 1990s. The present review provides on update on the latest data collections conducted since the previous review. These cover the fourth waves of data collection in the older cohort (twins born before 1958) and Finntwin12 (twins born 1983–1987). The fifth wave of data collection in Finntwin16 (twins born 1975–1979) also included assessments of their spouses/partners. An analysis of mortality in the older cohort from 1975 to 2009 indicates that the mortality of adult twins (as individuals) does not differ from the population at large. Based on the cohorts, many sub-studies with more detailed phenotyping and collection of omics data have been conducted or are in progress. We also contribute to numerous national and international collaborations.

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ml-RECIST: Machine learning to estimate RECIST in patients with NSCLC treated with PD-(L)1 blockade.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.9052 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 9052-9052

Author(s):

Kathryn Cecilia Arbour ◽

Luu Anh Tuan ◽

Hira Rizvi ◽

Adam Yala ◽

Matthew David Hellmann ◽

...

Keyword(s):

Machine Learning ◽

Progression Free Survival ◽

Standard Of Care ◽

Radiology Reports ◽

Clinical Databases ◽

Real World Evidence ◽

Standard Of Care Treatment ◽

Similar Accuracy ◽

Effective Use

9052 Background: Real-world evidence (RWE) is increasingly important for discovery and may be an opportunity for regulatory approval. Effective use of RWE relies on determining treatment-specific outcomes, such as overall response rate (ORR) and progression-free survival (PFS), which are challenging to accurately evaluate retrospectively and at scale. We hypothesized the use of machine learning of text radiology reports from patients with NSCLC treated with PD-1 blockade could be used to train a model that estimates RECIST-defined outcomes. Methods: 2753 imaging reports from 453 patients with advanced NSCLC treated with PD-1 blockade were collected and separated into independent training (80%, n = 362) and validation (20%, n = 92) cohorts. Reports were limited to interval of PD-1 blockade. RECIST reads performed by thoracic radiologists on all patients served as “gold standard” to determine ORR, occurrence of, and date of progression. Baseline reports were compared to all follow up reports to determine machine-learning RECIST (ml-RECIST). A four layers neural-network model for classification was proposed to solve the three above tasks. Results: In the training cohort, ml-RECIST best estimated ORR by RECIST (accuracy CR/PR 84%, SD 82%, POD 91%). ml-RECIST estimated PFS by RECIST accurately predicting progression occurred at any time (86%) and exact progression date (65%). Date of progression was closely correlated (Pearson’s r coefficient = 0.91, 95% CI:0.89-0.94, p < 0.001) in patients determined to have progressed by both methods. Similar accuracy of ml-RECIST was observed in the validation cohort (accuracy CR/PR 84%, SD 80%, POD 90%; progression occurred 86%, progression date 72%). Accuracy was consistent when RECIST reads were performed prospectively as part of clinical trials vs retrospectively for standard of care treatment (e.g. CR/PR 82% vs 88%, respectively). ml-RECIST-defined response similarly determined improvement in overall survival compared to RECIST (HR = 0.19, p < 0.001 vs HR = 0.26, p < 0.001 respectively). Conclusions: Machine learning-RECIST ("ml-RECIST") accurately estimates outcomes using imaging text reports. ml-RECIST may be tool to determine outcomes expeditiously and at scale for use in RWE studies, enabling more useful and reliable applications of large clinical databases.

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No relation between biomarkers at age 47–49 and aortic diameter after 14–19 years of follow-up – a population-based study

VASA ◽

10.1024/0301-1526/a000632 ◽

2017 ◽

Vol 46 (4) ◽

pp. 291-295 ◽

Cited By ~ 2

Author(s):

Soumia Taimour ◽

Moncef Zarrouk ◽

Jan Holst ◽

Olle Melander ◽

Gunar Engström ◽

...

Keyword(s):

Population Based ◽

Aortic Diameter ◽

Aortic Dilatation ◽

Population Based Study ◽

Reactive Protein ◽

Abdominal Aortic ◽

Long Term Follow Up ◽

Old Men

Abstract. Background: Biomarkers reflecting diverse pathophysiological pathways may play an important role in the pathogenesis of abdominal aortic aneurysm (aortic diameter ≥30 mm, AAA), levels of many biomarkers are elevated and correlated to aortic diameter among 65-year-old men undergoing ultrasound (US) screening for AAA. Probands and methods: To evaluate potential relationships between biomarkers and aortic dilatation after long-term follow-up, levels of C-reactive protein (CRP), proneurotensin (PNT), copeptin (CPT), lipoprotein-associated phospholipase 2 (Lp-PLA2), cystatin C (Cyst C), midregional proatrial natriuretic peptide (MR-proANP), and midregional proadrenomedullin (MR-proADM) were measured in 117 subjects (114 [97 %] men) aged 47–49 in a prospective population-based cohort study, and related to aortic diameter at US examination of the aorta after 14–19 years of follow-up. Results: Biomarker levels at baseline did not correlate with aortic diameter after 14–19 years of follow up (CRP [r = 0.153], PNT [r = 0.070], CPT [r = –.156], Lp-PLA2 [r = .024], Cyst C [r = –.015], MR-proANP [r = 0.014], MR-proADM [r = –.117]). Adjusting for age and smoking at baseline in a linear regression model did not reveal any significant correlations. Conclusions: Tested biomarker levels at age 47–49 were not associated with aortic diameter at ultrasound examination after 14–19 years of follow-up. If there are relationships between these biomarkers and aortic dilatation, they are not relevant until closer to AAA diagnosis.

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Does Hospitalization Predict the Disease Course in Ulcerative Colitis? Prevalence and Predictors of Hospitalization and Re- Hospitalization in Ulcerative Colitis in a Population-based Inception Cohort (2000-2012)

Journal of Gastrointestinal and Liver Diseases ◽

10.15403/jgld.2014.1121.243.pag ◽

2015 ◽

Vol 24 (3) ◽

pp. 287-292 ◽

Cited By ~ 5

Author(s):

Petra A. Golovics ◽

Laszlo Lakatos ◽

Michael D. Mandel ◽

Barbara D. Lovasz ◽

Zsuzsanna Vegh ◽

...

Keyword(s):

Ulcerative Colitis ◽

Cox Regression ◽

Diagnostic Procedures ◽

Population Based ◽

Disease Course ◽

Inception Cohort ◽

Disease Extent ◽

Cox Regression Analysis ◽

Hospitalization Rates

Background & Aims: Limited data are available on the hospitalization rates in population-based studies. Since this is a very important outcome measure, the aim of this study was to analyze prospectively if early hospitalization is associated with the later disease course as well as to determine the prevalence and predictors of hospitalization and re-hospitalization in the population-based ulcerative colitis (UC) inception cohort in the Veszprem province database between 2000 and 2012. Methods: Data of 347 incident UC patients diagnosed between January 1, 2000 and December 31, 2010 were analyzed (M/F: 200/147, median age at diagnosis: 36, IQR: 26-50 years, follow-up duration: 7, IQR 4-10 years). Both in- and outpatient records were collected and comprehensively reviewed. Results: Probabilities of first UC-related hospitalization were 28.6%, 53.7% and 66.2% and of first re-hospitalization were 23.7%, 55.8% and 74.6% after 1-, 5- and 10- years of follow-up, respectively. Main UC-related causes for first hospitalization were diagnostic procedures (26.7%), disease activity (22.4%) or UC-related surgery (4.8%), but a significant percentage was unrelated to IBD (44.8%). In Kaplan-Meier and Cox-regression analysis disease extent at diagnosis (HR extensive: 1.79, p=0.02) or at last follow-up (HR: 1.56, p=0.001), need for steroids (HR: 1.98, p<0.001), azathioprine (HR: 1.55, p=0.038) and anti-TNF (HR: 2.28, p<0.001) were associated with the risk of UC-related hospitalization. Early hospitalization was not associated with a specific disease phenotype or outcome; however, 46.2% of all colectomies were performed in the year of diagnosis. Conclusion: Hospitalization and re-hospitalization rates were relatively high in this population-based UC cohort. Early hospitalization was not predictive for the later disease course.

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