The validity of algorithms using health administrative data in identifying cancer-related events in adolescents and young adults: A population-based study using the IMPACT cohort.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e18168-e18168
Author(s):  
Jason D Pole ◽  
Paul C. Nathan ◽  
Nancy N. Baxter ◽  
Cindy Lau ◽  
Corinne Daly ◽  
...  
Keyword(s):  
Young Adults ◽  
Administrative Data ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Administrative Databases ◽  
Time Interval ◽  
Cancer Outcomes ◽  
Health Administrative Data ◽  
Chart Abstraction ◽  
The Impact

e18168 Background: Despite the importance of estimating population level cancer outcomes, most registries do not collect critical events such as relapse and progression. Attempts to use health administrative data to identify these events have focused on older adults and have been mostly unsuccessful. We developed and tested administrative data-based algorithms in a population-based cohort of adolescents and young adults (AYA) with cancer. Methods: We identified all Ontario AYA 15-21 years of age diagnosed with leukemia, lymphoma, sarcoma, or testicular cancer between 1992 and 2012. Chart abstraction was used to determine the end of initial treatment (EOIT) date and subsequent cancer-related events (progression, relapse, second cancer). Linkage to population-based administrative databases identified fee and procedure codes indicating cancer treatment or palliative care. Algorithms that determined EOIT based a time interval free of treatment-associated codes, and new cancer-related events based on billing codes, were compared to chart abstracted data. Results: The cohort comprised 1,404 patients. Time periods free of treatment-associated codes did not validly identify EOIT dates; using subsequent codes to identify new cancer events was thus associated with low sensitivity (56.2%). However, using administrative data codes that occurred after the EOIT date based on chart abstraction, the first cancer-related event was identified with excellent validity (sensitivity 87.0%, specificity 93.3%, PPV 81.5%, negative predictive value 95.5%). Conclusions: While administrative data alone did not validly identify cancer-related events, using administrative data in combination with chart collected EOIT dates was associated with excellent validity. The collection of EOIT dates by cancer registries would significantly expand the potential of administrative data linkage to assess cancer outcomes.

scholarly journals Identifying Prenatal Opioid Exposure in Health Administrative Data for Public Health Surveillance and Epidemiologic Research

2020 ◽  
Vol 5 (5) ◽  
Author(s):  
Andi Camden ◽  
Teresa To ◽  
Joel G Ray ◽  
Tara Gomes ◽  
Li Bai ◽  
...  
Keyword(s):  
Prescription Drug ◽  
Administrative Data ◽  
Population Based ◽  
Emergency Department Visits ◽  
Prescription Data ◽  
Opioid Use ◽  
Health Administrative Data ◽  
Maternal Characteristics ◽  
Data Source ◽  
The Impact

IntroductionAccurate estimation of prenatal opioid exposure (POE) is needed for population-based surveillance & research but can be challenging with health administrative data due to varying definitions & methods. Prior research has relied primarily on infant records with a diagnosis of neonatal abstinence syndrome (NAS). Objectives and Approach1) Evaluate the impact of using different definitions of maternal opioid use in the estimation of POE; 2) Investigate whether maternal characteristics vary by the type of definition used. Population-based cross-sectional study of all hospital births (N= 454,746) from 2014-2017 in Ontario, Canada. Multiple linked population-based health administrative databases were used to identify opioid-related pre- & perinatal Emergency Department visits & hospitalizations & opioid prescriptions. We examined how pre-conception & in-pregnancy maternal characteristics varied by using different approaches to ascertain POE. ResultsThere were 9624 live/still births with POE. Ascertainment of POE was highest using maternal prescription drug data (79%) & infant hospital records with NAS (45%). Maternal characteristics varied by data source used for POE ascertainment. Opioid-related health care during pregnancy identified a high-risk phenotype, contrasted with those ascertained through prescription data, with respective rates of 64% vs. 54% for social assistance, 37% vs. 12% for polydrug use, 23% vs. 6% for alcohol use, 26% vs. 19% for 3+ live births, 13% vs. 5% for victim of violence, 12% vs. 6% for involvement in criminal justice system & 64% vs. 17% for mental health & addictions hospital care. Conclusion / ImplicationsPOE ascertainment differs by health administrative data source & ability to link both across maternal records and with infant. Prescription drug data identified the highest number of opioid-exposed births and, with linked healthcare records, is useful to identify illicit opioid use & additional risk factors. Clinically meaningful differences in maternal characteristics of opioid users exist by POE ascertainment method.

Prevalence and predictors of high-intensity end-of-life care among adolescents and young adults with cancer in Ontario: a population-based study using the IMPACT cohort.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 10559-10559
Author(s):  
Hallie Coltin ◽  
Adam Rapoport ◽  
Chenthila Nagamuthu ◽  
Nancy N. Baxter ◽  
Paul C. Nathan ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Young Adults ◽  
End Of Life ◽  
Rural Areas ◽  
High Intensity ◽  
Early Period ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Eol Care ◽  
The Impact

10559 Background: End-of-life (EOL) care in adolescents and young adults (AYA) with cancer is poorly characterized, though this group may be at risk of elevated rates of high-intensity (HI) care and consequently, increased EOL suffering. Few population-based studies exist, and are limited by incomplete clinical information. AYA care patterns can vary by locus of care (LOC – pediatric v. adult), but LOC disparities in AYA EOL care are unstudied. Methods: We conducted a retrospective decedent population-based cohort study of all Ontario AYA diagnosed between 15-21 years of age with 6 prevalent primary cancers between 1992-2012, who died ≤5 years from diagnosis. Chart-abstracted clinical data were linked to health services data. The primary composite outcome (HI-EOL care) included any of: intravenous chemotherapy ≤14 days from death; > 1 emergency department visit ≤30 days from death; or > 1 hospitalization or intensive care unit (ICU) admission ≤30 days from death. Secondary outcomes included measures of the most invasive (MI) EOL care: mechanical ventilation ≤14 days from death, and death in the ICU. Factors associated with HI-EOL were examined. Results: Of 483 patients, 292 (60.5%) experienced HI-EOL care, 98 (20.3%) were mechanically ventilated ≤14 days from death, and 110 (22.8%) died in the ICU. Patients with hematological malignancies (v. solid tumors) were at greatest risk of HI-EOL care (OR, 2.3; 95CI, 1.5-3.5, p < 0.01), mechanical ventilation (OR, 5.4; 95CI, 3.0-9.7, p < 0.01), and death in an ICU (OR, 4.9; 95CI, 2.8-8.5, p < 0.01). AYA who died in a pediatric center were substantially more likely to experience MI-EOL measures compared to those dying in adult centers (mechanical ventilation, OR 3.2, 95CI 1.3-7.6, p = 0.01). Assessment of interactions showed LOC-based disparities widening over the study period (ICU death in pediatric v. adult centres: early period OR 0.9, 95CI 0.3-2.9, p = 0.91; late period OR 3.3, 95CI 1.2-9.2, p = 0.02; interaction term p = 0.04). AYA living in rural areas were also at higher risk of experiencing mechanical ventilation (OR, 2.0; 95CI, 1.0-3.8, p = 0.04) and death in ICU (OR, 2.1; 95CI, 1.1-4.0, p = 0.02). Conclusions: AYA with cancer experience high rates of HI-EOL care, with patients in pediatric centers and those living in rural areas at highest risk of MI-EOL care. Our study is the first to identify LOC-based disparities in AYA EOL care. Future studies should explore mechanisms underlying these disparities, including potential differences in palliative care services.

scholarly journals Increasing Incidence and Prevalence of Pathologic Hemoglobinopathies Among Children in Ontario, Canada from 1991-2013

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4698-4698
Author(s):  
Ewurabena Simpson ◽  
Robert J Klaassen ◽  
Pranesh Chakraborty ◽  
Beth Potter ◽  
Melanie Ann Kirby-Allen ◽  
...  
Keyword(s):  
Health Services ◽  
Chronic Diseases ◽  
Administrative Data ◽  
Research Funding ◽  
Population Based ◽  
Advisory Board ◽  
Crude Incidence ◽  
Health Administrative Data ◽  
The Impact ◽  
Reference Cohort

Abstract Background: In Ontario, Canada's largest province, population-based health administrative data represents an accessible and useful tool for population surveillance of people with chronic diseases. While hemoglobinopathies can be identified using data from universal hemoglobinopathy screening, which was implemented in November 2006, these data would not contain information on affected immigrants (21.9% of the population). We validated algorithms using provincial health administrative data and newborn screening data to identify children with hemoglobinopathies whether or not they were born in Ontario, thereby creating a population-based surveillance cohort. Objectives: (1) Validate algorithms to identify children with sickle cell disease, thalassemia and other hemoglobinopathies from within health administrative data; and (2) Determine incidence and prevalence of hemoglobinopathies in Ontario children. Methods: For the validation study, a positive reference cohort was established using lists of known hemoglobinopathy patients who were followed at five pediatric hemoglobinopathy treatment sites in Ontario and born between November 24, 2006 and March 31, 2013. Health card numbers of these patients were linked deterministically to unique identification numbers in administrative data, which included data on hospitalizations, physician claims, sociodemographic characteristics, immigration records and cause of death. The negative reference cohort included all children residing in Ontario cities who had never been seen at a hemoglobinopathy centre, and therefore assumed not to have disease. Various combinations of administrative data codes were tested for their ability to identify children <18 years of age with hemoglobinopathies from within the databases, and we selected the algorithms with the highest positive predictive value, while maintaining sensitivity >80%. Using two validated algorithms, we identified all children with hemoglobinopathies born between April 1, 1991 and March 31, 2013. We described the crude incidence and prevalence per 100,000 patient-years (PYs). Results: Two algorithms functioned best to identify incident and prevalent hemoglobinopathy cases (see Table). Among children born between April 1, 1991 to March 31, 2013, 1526 incident hemoglobinopathy patients were identified using Algorithm 1 (crude incidence of 4.85 per 100,000 PYs) and 1660 new hemoglobinopathy patients were identified using Algorithm 2 (crude incidence 5.28 per 100,000 PYs, 95% CI 3.51 to 3.92). In 2013, the overall prevalence of children <18 years living with hemoglobinopathies was 1215-1325 cases. Conclusion: Through an innovative approach using provincial health administrative, immigration and demographic data, this study identified a rising incidence and prevalence of hemoglobinopathies among Ontario children <18 years of age between April 1, 1991 and March 31, 2013, potentially due to increased immigration rates. These findings could be used to inform health services distribution. This surveillance cohort will be used to understand the impact of immigration status on health care inequality for hemoglobinopathy-related health services delivery, as well as to assess outcomes in this important group of chronic diseases. Disclosures Klaassen: Amgen Inc.: Membership on an entity's Board of Directors or advisory committees; Octapharma AG: Consultancy, Honoraria; Agios Pharmaceuticals Inc.: Consultancy; Novartis: Research Funding; Hoffman-La Roche: Consultancy; Shire: Consultancy; Cangene: Research Funding. Jardine:Pfizer: Other: Advisory board; Bayer: Other: Advisory board; Baxalta: Other: Advisory board.

scholarly journals Outcome Among Adolescents and Young Adults with Acute Myeloid Leukemia at Pediatric Versus Adult Centers: A Population-Based Study Using the IMPACT Cohort

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 4749-4749
Author(s):  
Sumit Gupta ◽  
Nancy Baxter ◽  
Jason Pole ◽  
Cindy Lau ◽  
Rinku Sutradhar ◽  
...  
Keyword(s):  
Acute Myeloid Leukemia ◽  
Young Adults ◽  
Acute Lymphoblastic Leukemia ◽  
Myeloid Leukemia ◽  
Conflicts Of Interest ◽  
Lymphoblastic Leukemia ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
The Impact ◽  
Acute Myeloid

Background: Survival outcomes among adolescents and young adults (AYA) with acute myeloid leukemia (AML) remain poor. In AYA with acute lymphoblastic leukemia, outcomes differ between patients treated in pediatric vs. adult centers. This has not been well evaluated in AML. We therefore compared outcomes between AYA with AML treated at pediatric vs. adult centers using a population-based clinical database. In addition, we determined other predictors of outcome within this population. Methods: The IMPACT Cohort comprises all Ontario, Canada AYA aged 15-21 years diagnosed with one of six common cancers (including AML) between 1992-2012. Detailed demographic, disease, treatment, and outcome data were collected through chart abstraction and validated by content experts. Locus of cancer care (LOC - pediatric vs. adult center) was determined based on where the majority of therapy was delivered in the first three months after diagnosis. Linkage to population-based health administrative data identified additional cancer events (second cancers, relapse, death). Event-free (EFS) and overall survival (OS) were determined using Kaplan-Meier methods. The impact of LOC on EFS and OS was determined using multivariable Cox proportional hazard models, adjusting for demographic, disease, and treatment variables. Events included disease progression, relapse, death, and second malignancies. Results: Among 140 AYA with AML, 89 (63.6%) received therapy at an adult center. AYA treated in pediatric centers were younger than those treated at adult centers (median 16 years vs. 19 years; p<0.001) and were more likely to live in higher-income neighborhoods [37/51 (72.5%) vs. 47/89 (52.8%); p=0.02]. Disease markers such as presenting white blood cell count and AML subtype did not differ by LOC. The 5-year EFS and OS for the whole cohort were 35.0%±4.0% and 53.6%±4.2%. Neither EFS nor OS differed by LOC (Table 1). In multivariable analyses adjusting for disease characteristics, LOC was not predictive of either EFS [adult vs. pediatric center hazard ratio (HR) 1.3, 95thconfidence interval (CI) 0.8-2.2, p=0.27] or OS (HR 1.0, CI 0.6-1.6, p=0.97). AYA with AML living in rural areas however experienced significantly inferior outcomes as compared to their urban counterparts (EFS: HR 2.5, CI 1.3-4.7, p=0.005; OS: HR 2.0, CI 1.1-3.8, p=0.04). Conclusions: In this population-based cohort, outcomes did not differ between AYA with AML treated at pediatric vs. adult centers, unlike what has been previously shown in AYA with acute lymphoblastic leukemia. However, rural AYA experienced substantially inferior outcomes than urban AYA, suggesting that even within a universal single payer system of healthcare, socioeconomic disparities persist in this population. Disclosures No relevant conflicts of interest to declare.

scholarly journals Impact of Locus of Care on Outcomes in Adolescents and Young Adults with Osteogenic sarcoma and Ewing Sarcoma treated at Pediatric versus Adult Cancer Centers: An IMPACT Cohort Study

2021 ◽  
Author(s):  
Mohammadreza Mortazavi ◽  
Nancy Baxter ◽  
Sumit Gupta ◽  
Abha Gupta ◽  
Cindy Lau ◽  
...  
Keyword(s):  
Young Adults ◽  
Ewing Sarcoma ◽  
Multivariable Analysis ◽  
Osteogenic Sarcoma ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Free Survival ◽  
Treatment Data ◽  
Cancer Types ◽  
The Impact

Abstract Background: Location of cancer care (LOC: pediatric versus adult center) impacts outcomes in adolescents and young adults (AYA) with some cancer types. Data on impact of LOC on survival in AYA with osteogenic sarcoma (OGS) and Ewing sarcoma (EWS) are limited. Objectives: To compare differences in demographics, disease/treatment characteristics, and survival in a population-based cohort of AYA with OGS or EWS treated at pediatric versus adult centers Methods: The IMPACT Cohort captured demographic, disease, and treatment data for all AYA (15-21 years old) diagnosed with OGS and EWS in Ontario, Canada between 1992-2012. Patients were linked to provincial administrative healthcare databases. Outcomes were compared between patients treated in pediatric versus adult centers using appropriate statistical methods. Results: 137 AYA were diagnosed with OGS (LOC: 47 pediatric, 90 adult) and 84 with EWS (LOC: 38 pediatric, 46 adult). AYA treated at pediatric centers were more likely to be enrolled in a clinical trial (OGS 55% vs 1%, [p<0.001]; EWS 53% vs 2%, [p<0.001]) and received higher cumulative chemotherapy doses. Five-year event-free survival (EFS ± Standard Error) in OGS and EWS were 47% ± 4 and 43% ± 5, respectively. In multivariable analysis, the impact of LOC (pediatric vs adult center) on EFS in OGS (adjusted hazard ratio [HR] 1.15, 95% CI 0.58-2.27, P=0.69) and EWS (adjusted HR 1.82, 95% CI 0.97-3.43, P=0.06) were not statistically significant. Conclusion: Outcomes did not differ by LOC suggesting that AYA with bone tumors can be treated at either pediatric or adult centers.

scholarly journals Identifying Patients with Physician-Diagnosed Asthma in Health Administrative Databases

2009 ◽  
Vol 16 (6) ◽  
pp. 183-188 ◽  
Author(s):  
Andrea S Gershon ◽  
Chengning Wang ◽  
Jun Guan ◽  
Jovanka Vasilevska-Ristovska ◽  
Lisa Cicutto ◽  
...  
Keyword(s):  
Administrative Data ◽  
Population Based ◽  
Administrative Databases ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Health Administrative Data ◽  
Diagnostic Test Evaluation ◽  
Ongoing Surveillance ◽  
Primary Care Practices ◽  
Respiratory Conditions

BACKGROUND: Asthma imposes a heavy and expensive burden on individuals and populations. A population-based surveillance and research program based on health administrative data could measure and study the burden of asthma; however, the validity of a health administrative data diagnosis of asthma must first be confirmed.OBJECTIVE: To evaluate the accuracy of population-based provincial health administrative data in identifying adult patients with asthma for ongoing surveillance and research.METHODS: Patients from randomly selected primary care practices were assigned to four categories according to their previous diagnoses: asthma, chronic obstructive pulmonary disease, related respiratory conditions and nonasthma conditions. In each practice, 10 charts from each category were randomly selected, abstracted, then reviewed by a blinded expert panel who identified them as asthma or nonasthma. These reference standard diagnoses were then linked to the patients’ provincial records and compared with health administrative algorithms designed to identify asthma. Analyses were performed using the concepts of diagnostic test evaluation.RESULTS: A total of 518 charts, including 160 from individuals with asthma, were reviewed. The algorithm of two or more ambulatory care visits and/or one or more hospitalization(s) for asthma in two years had a sensitivity of 83.8% (95% CI 77.1% to 89.1%) and a specificity of 76.5% (95% CI 71.8% to 80.8%).CONCLUSION: Definitions of adult asthma using health administrative data are sensitive and specific for identifying adults with asthma. Using these definitions, cohorts of adults with asthma for ongoing population-based surveillance and research can be developed.

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study

2021 ◽  
pp. JCO.20.03698
Author(s):  
Alisha Kassam ◽  
Abha Gupta ◽  
Adam Rapoport ◽  
Amirrtha Srikanthan ◽  
Rinku Sutradhar ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Palliative Care ◽  
Young Adults ◽  
End Of Life ◽  
Population Level ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Eol Care ◽  
The Impact

PURPOSE Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs. METHODS A retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models. RESULTS Of 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43). CONCLUSION A large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer.

Epidemiology of pheochromocytoma and paraganglioma: population-based cohort study

2021 ◽  
Vol 184 (1) ◽  
pp. 19-28
Author(s):  
Alexander A Leung ◽  
Janice L Pasieka ◽  
Martin D Hyrcza ◽  
Danièle Pacaud ◽  
Yuan Dong ◽  
...  
Keyword(s):  
Cohort Study ◽  
Administrative Data ◽  
Laboratory Data ◽  
Population Based ◽  
Incidence Rates ◽  
Primary Objective ◽  
Administrative Databases ◽  
Secondary Objective ◽  
True Frequency ◽  
Clinical Records

Objective Despite the significant morbidity and mortality associated with pheochromocytoma and paraganglioma, little is known about their epidemiology. The primary objective was to determine the incidence of pheochromocytoma and paraganglioma in an ethnically diverse population. A secondary objective was to develop and validate algorithms for case detection using laboratory and administrative data. Design Population-based cohort study in Alberta, Canada from 2012 to 2019. Methods Patients with pheochromocytoma or paraganglioma were identified using linked administrative databases and clinical records. Annual incidence rates per 100 000 people were calculated and stratified according to age and sex. Algorithms to identify pheochromocytoma and paraganglioma, based on laboratory and administrative data, were evaluated. Results A total of 239 patients with pheochromocytoma or paraganglioma (collectively with 251 tumors) were identified from a population of 5 196 368 people over a period of 7 years. The overall incidence of pheochromocytoma or paraganglioma was 0.66 cases per 100 000 people per year. The frequency of pheochromocytoma and paraganglioma increased with age and was highest in individuals aged 60–79 years (8.85 and 14.68 cases per 100 000 people per year for males and females, respectively). An algorithm based on laboratory data (metanephrine >two-fold or normetanephrine >three-fold higher than the upper limit of normal) closely approximated the true frequency of pheochromocytoma and paraganglioma with an estimated incidence of 0.54 cases per 100 000 people per year. Conslusion The incidence of pheochromocytoma and paraganglioma in an unselected population of western Canada was unexpectedly higher than rates reported from other areas of the world.

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