Databases for Congenital Heart Defect Public Health Studies Across the Lifespan
2016; Wiley; Volume: 5; Issue: 11 Linguagem: Inglês
10.1161/jaha.116.004148
ISSN2047-9980
AutoresTiffany Riehle‐Colarusso, Lisa Bergersen, Craig S. Broberg, Cynthia H. Cassell, Darryl T. Gray, Scott D. Grosse, Jeffrey P. Jacobs, Marshall L. Jacobs, Russell S. Kirby, Lazaros Kochilas, Asha Krishnaswamy, Arianne Marelli, Sara K. Pasquali, Thalia Wood, Matthew E. Oster, Ginnie Lee Abarbanell, Faith Adams, S. W. Allen, Sydney Allen, Anand Ambrose, Carl L. Backer, Andrea Baer, Carissa M. Baker‐Smith, Mona Barmash, Amy Basken, Cassandra Bates, Sarosh P. Batlivala, Robert H. Beekman, John W. Belmont, Joshua Benke, Stuart Berger, JR Bockerstette, Jeffrey R. Boris, Lorenzo D. Botto, Jackie L. Boucher, Dana Brock Hageman, Cheryl Brosig Soto, Kristin Marie Burns, Lenore Cameron, Robert M. Campbell, Steven E. Colan, Lynn Colegrove, Christina Coleman, Angie Colson, Adolfo Correa, Pamela Costa, Chris Couser, Melissa Crenshaw, Tessa Crume, Rachel Daskalov, Mark Del Monte, Lindsay L. DeSantis, Kaitlin Doherty, Kenneth J. Dooley, Charles W Duke, Pirooz Eghtesady, Saiza Elayda, Alison Ellison, Tim Elsner, Cori Erntz, Michelle Esquivel, Bethany Evans, Lloyd R. Feit, Marcia L. Feldkamp, William J. Foley, Elyse Foster, Wayne Franklin, Bridget Freeley, Frank M. Galioto, Mary G. George, Michael H. Gewitz, Katja M. Gist, Thomas Glenn, Melissa Jill Glidewell, Lorraine A. Gore, Johanna M. Gray, Hannah Green, Scott D. Grosse, Michelle Gurvitz, Sonia Handa, Melissa Harvey, Emilie Heath, Danielle Hile, John S. Hokanson, Margaret A. Honein, Marius M. Hubbell, Jeff Hudson, Kelly Huhn, Dawn Ilardi, Dawn C. Jacobs, Robert D.B. Jaquiss, Kathy J. Jenkins, Anitha S. John, P. M. Johnson, Shakila Johnson, Emily Jones, Antonios P. Jossif, Jonathan R. Kaltman, David Kasnic, Alex R. Kemper, Natalie Kenny, Paul Khairy, Valerie King, Donna Knapp, Daisuke Kobayashi, Adrienne H. Kovacs, James E. Kucik, Karen Kuehl, Alexandra Kuznetsov, Scott Leezer, Jodi Lemacks, Patty Libby, Paul H. Lipkin, Michele A. Lloyd-Puryear, Keila N. Lopez, Nicolas Madsen, Cara Mai, Monica Mann, Bradley S. Marino, Gerard R. Martin, G. Paul Matherne, Phillip Mauller, Susan May, Edward R.B. McCabe, Nancy McCabe, Michelle McCardle, Ty McCathran, Amy McCathran, Michael E. McConnell, Kristine Brite McCormick, Eric Melsom, William Kelly Milionis, Paula G. Miller, Erika Miller, Stephanie Mitchell, Cynthia A. Moore, Laura Morris, Angela Murray, Kathleen Mussatto, Steven R. Neish, Sue Nelson, Jane W. Newburger, Jeremy Nicolarsen, Autumn Niggles, Jacqueline A. Noonan, Gail Ober, Lori O’Keefe, Marc Overcash, Jennifer Page, Matthew Vaughn Park, Mehul Patel, Jasmin Patel, Gail D. Pearson, Cindy Pellegrini, Corrie Pierce, Nelangi M. Pinto, Kara D. Polen, Jose A. Quinones, Carol Raimondi, P. Richter, Michelle Rintamaki, Elisa Robles, Geoffrey L. Rosenthal, Grahame Rush, Laura Russell, Annamarie Saarinen, Craig Sable, Joel Saltz, Terri Schaefer, Kathryn Schubert, Vida Schwartz, Stuart K. Shapira, Kathleen M. Sheehan, Brenda Silverman, Regina M. Simeone, Juanita Smith, Kimberly E. Smith, Kristina Smith, Marci K. Sontag, Shubhika Srivastava, Corrie Stassen, Corey Stiver, Kathryn A. Taubert, Judy Thibadeau, John P. Thomas, Dena Thomas, Vivian Thorne, Linda Bradley Tiernan, S. M. Timmins, Colby Tiner, Natalie Torentinos, Glenn R. Tringali, James S. Tweddell, Lisa Vasquez, Amy Verstappen, Janice Ware, Caron Watkins, Catherine L. Webb, Ellen Weiss, Marina Weiss, Gil Wernovsky, Gretchen Whitehurst, Herbert Whitley, Jennifer Witten, Austin Henry Wong, Matthew Wright, Robert Wynbrant, Bistra Zheleva,
Tópico(s)Cardiac Structural Anomalies and Repair
ResumoHomeJournal of the American Heart AssociationVol. 5, No. 11Databases for Congenital Heart Defect Public Health Studies Across the Lifespan Open AccessReview ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citations ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toOpen AccessReview ArticlePDF/EPUBDatabases for Congenital Heart Defect Public Health Studies Across the Lifespan Tiffany J. Riehle‐Colarusso, MD, MPH, Lisa Bergersen, MD, MPH, Craig S. Broberg, MD, MCR, Cynthia H. Cassell, PhD, Darryl T. Gray, MD, ScD, Scott D. Grosse, PhD, Jeffrey P. Jacobs, MD, Marshall L. Jacobs, MD, Russell S. Kirby, PhD, MS, Lazaros Kochilas, MD, MSCR, Asha Krishnaswamy, BEE, MS, Arianne Marelli, MD, MPH, Sara K. Pasquali, MD, MHS, Thalia Wood, MPH and Matthew E. Oster, MD, MPH Tiffany J. Riehle‐ColarussoTiffany J. Riehle‐Colarusso Division of Congenital and Developmental Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA , Lisa BergersenLisa Bergersen Department of Cardiology, Harvard Medical School, Children's Hospital of Boston, MA , Craig S. BrobergCraig S. Broberg Adult Congenital Heart Program, Knight Cardiovascular Institute, Oregon Health and Science University, Portland, OR , Cynthia H. CassellCynthia H. Cassell Division of Congenital and Developmental Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA , Darryl T. GrayDarryl T. Gray Center for Quality Improvement and Patient Safety, Agency for Healthcare Research and Quality, Rockville, MD , Scott D. GrosseScott D. Grosse Office of the Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA , Jeffrey P. JacobsJeffrey P. Jacobs Division of Cardiovascular Surgery, Department of Surgery, Johns Hopkins All Children's Heart Institute, Johns Hopkins All Children's Hospital and Florida Hospital for Children, St. Petersburg, Tampa, and Orlando, FL Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University, Baltimore, MD , Marshall L. JacobsMarshall L. Jacobs Division of Cardiovascular Surgery, Department of Surgery, Johns Hopkins All Children's Heart Institute, Johns Hopkins All Children's Hospital and Florida Hospital for Children, St. Petersburg, Tampa, and Orlando, FL Division of Cardiac Surgery, Department of Surgery, Johns Hopkins University, Baltimore, MD , Russell S. KirbyRussell S. Kirby Department of Community and Family Health, College of Public Health, University of South Florida, Tampa, FL , Lazaros KochilasLazaros Kochilas Children's Healthcare of Atlanta, Emory University School of Medicine, Atlanta, GA , Asha KrishnaswamyAsha Krishnaswamy Division of Congenital and Developmental Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA , Arianne MarelliArianne Marelli McGill Adult Unit for Congenital Heart Disease, Montreal, Québec, Canada , Sara K. PasqualiSara K. Pasquali Department of Pediatrics and Communicable Diseases, University of Michigan C.S. Mott Children's Hospital, Ann Arbor, MI , Thalia WoodThalia Wood Association of Public Health Laboratories, Silver Spring, MD and Matthew E. OsterMatthew E. Oster Division of Congenital and Developmental Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA Children's Healthcare of Atlanta, Emory University School of Medicine, Atlanta, GA and the Congenital Heart Public Health Consortium† Originally published26 Oct 2016https://doi.org/10.1161/JAHA.116.004148Journal of the American Heart Association. 2016;5:e004148IntroductionIn a 2012 meeting at the Centers for Disease Control and Prevention (CDC), key experts and stakeholders identified public health knowledge gaps about congenital heart defects (CHDs), namely prevalence of CHDs across the life span, long‐term outcomes of persons with CHDs, and health services delivery for persons with CHDs.1 These gaps, and strategies to address them, formed the basis of a CHD public health science agenda. The strategies included leveraging information in existing databases to examine the epidemiology, health outcomes, and health service utilization of the CHD population.1 Many databases with CHD data exist and are managed by hospitals, specialty organizations, partnerships, and public health and other governmental entities. Researchers may be familiar with some databases but not others. Anyone planning studies to address public health knowledge gaps may benefit from an understanding of this complex constellation of databases.The Congenital Heart Public Health Consortium (CHPHC) was formed in 2009 as a collaboration of stakeholders with its mission to prevent CHDs and improve outcomes for affected individuals.2 The CHPHC created a database workgroup to increase awareness of opportunities to contribute to the public health science agenda for CHDs using existing databases. The workgroup, consisting of experts in various disciplines (cardiologists, surgeons, epidemiologists, health service researchers), identified databases located in Canada or the United States (US) with information on CHDs from 1990 onward. The goals of this article are to provide an overview of database types and to list examples of databases that may be used to address CHD public health knowledge gaps. IRB approval was not deemed necessary for this review.Database characteristics that may be important to consider when designing a study to address CHD public health knowledge gaps can be grouped into 3 main areas: (1) population included, (2) data content, and (3) accessibility. The first area relates to aspects such as sample size, inclusion criteria, whether the database is population‐based, and whether persons are followed for a period of time. The second relates to what variables are included (eg, type and amount of clinical detail, information on resource utilization, or financial information), data collection mechanisms and coding, and data timeliness, accuracy, and completeness. The last area involves obtaining access to use the data, which may be costly, time consuming, or restricted, and will vary depending on the database selected.Using existing data is often more cost effective and reasonable than gathering new data; however, research is limited to the data that are available, and there is often no perfect data set to answer a particular question. Features of particular databases vary in importance, depending on the research question. One database's strength in answering a question may be a limitation for another question. For example, a database may be population‐based but have limited clinical detail. This database may be good for an overall prevalence estimate but not as useful for analyzing treatment outcomes of a particular CHD phenotype. It is the role of the researcher to determine which characteristics are most important and to find the appropriate database that will best inform the particular research question. This article does not comment on the strengths or weaknesses of specific databases but, rather, presents general information and additional resources. Researchers may use this information to help determine the utility of existing databases for their particular CHD public health study.Database Categories and ExamplesWe grouped examples of databases into categories based on type of data source (administrative healthcare, birth defect surveillance, clinical, survey, and vital records). We briefly describe each category below, with a discussion of strengths and limitations to consider when addressing public health knowledge gaps. We also determined whether identified example databases had individuals with only CHDs (cardiac‐specific databases) or had individuals with many conditions, including CHDs (general databases). Examples of cardiac‐specific and general databases in each of these categories are listed in Tables 1, 2, 3 through 4. Some databases have more than one type of data source and are therefore listed in Table 5 under a separate combined category heading (eg, Administrative and Clinical). The tables provide a brief description of the database, sponsoring organization, years of data, and a URL link for further information. An asterisk denotes cardiac‐specific databases. Although basic information is provided on a variety of databases, researchers are encouraged to contact database hosts for further information to assess their utility. Also, because databases are constantly evolving, other databases not captured in these tables may be useful in addressing a particular question.Table 1. Administrative Healthcare Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health InvestigationsNameBrief DescriptionSponsoring OrganizationData YearsURL (Accessed as of June 1, 2016)Administrative—Heathcare Cost and Utilization Project (HCUP) DatabasesKids' Inpatient Database (KID)Weighted sample of the SID data (see below) used to identify, track, & analyze national trends in pediatric inpatient healthcare; sampling weights help provide national estimatesAgency for Healthcare Research and Quality (AHRQ)Every 3 years; 1997–presenthttp://www.hcup-us.ahrq.gov/kidoverview.jspNationwide Emergency Department Sample (NEDS)Sampled from the SID and SEDD data (see below), is the largest all‐payer emergency department (ED) database in the US used to create estimates of ED careAgency for Healthcare Research and Quality (AHRQ)2006–2013http://www.hcup-us.ahrq.gov/nedsoverview.jspNationwide/National Inpatient Sample (NIS)Weighted sample of discharges from US community hospitals, which is the largest publicly available all‐payer inpatient healthcare database in the US; sampling weights help provide national estimatesAgency for Healthcare Research and Quality (AHRQ)1988–presenthttp://www.hcup-us.ahrq.gov/nisoverview.jspNationwide Readmission Database (NRD)Sampled from the SID data (see below), used to create estimates of national readmission rates for all payers and the uninsuredAgency for Healthcare Research and Quality (AHRQ)2013http://www.hcup-us.ahrq.gov/nrdoverview.jspState Ambulatory Surgical and Service Databases (SASD)Encounter data for ambulatory surgery & other outpatient services from hospital‐owned facilities; capture of hospital‐based outpatient diagnostic and/or pediatric cardiac catheterization is variable, as are data content & years; some states have nonhospital outpatient dataAgency for Healthcare Research and Quality (AHRQ)1997–presenthttp://www.hcup-us.ahrq.gov/sasdoverview.jspState Emergency Department Databases (SEDD)Discharge data on all ED visits in a given state that do not result in an admission; ED visits resulting in admissions are captured in the SIDAgency for Healthcare Research and Quality (AHRQ)1999–presenthttp://www.hcup-us.ahrq.gov/seddoverview.jspState Inpatient Databases (SID)Inpatient discharge data from participating states used to identify, track, & analyze state trends in healthcare utilization, access, charges, quality, and outcomesAgency for Healthcare Research and Quality (AHRQ)1990–presenthttp://www.hcup-us.ahrq.gov/sidoverview.jspAdministrative—OthersHealthcare Cost Institute (HCCI) DatabaseCollection of claims data by nonpartisan, nonprofit organization on over 50 million people with employer‐sponsored insurance; annual reports published and data available to researchers to better understand determinants of US health care costs and utilizationHealthcare Cost Institute (HCCI)2007–presenthttp://www.healthcostinstitute.org/MarketScan® Research DatabasesDatabase system linking healthcare usage through commercial insurance, Medicaid, and Medicare to analyze a variety of outcomesTruven Health Analytics1995–presenthttp://truvenhealth.com/your-healthcare-focus/analytic-research/marketscan-research-databasesMedicaid Analytic Extracts (MAX)Contains enrollment information and paid claims at the state level for all Medicaid beneficiaries for inpatient and outpatient care, prescription medicationsCenters for Medicare and Medicaid Services (CMS)1999–2012http://www.resdac.org/cms-data/file-family/Medicaid-Analytic-Extracts-MAXNational Association of Children's Hospitals (NACH) Case Mix Comparative Data ProgramDatabase of 95 children's hospitals in the US with data to analyze inpatient populations, target quality improvement, enhance hospital utilization, & support advocacy on behalf of children's hospitalsNational Children's Hospital Association2000–2012http://www.childrenshospitals.net/Am/Template.cfm?Section=Home3Pediatric Health Information System (PHIS)Database of clinical and financial data from 49 tertiary‐care pediatric hospitals in the US affiliated with the Children's Hospital Association; data can be linked across encounters within the same hospitalChildren's Hospital Association1992–presenthttp://www.childrenshospitals.org/Quebec Congenital Heart Disease Database*Database from 3 province‐wide administrative databases, capturing demographics, diagnoses, procedures, and health services used throughout a patient's lifeMcGill Adult Unit Congenital Heart Disease Excellence1983–presentNone*Denotes cardiac‐specific databases.Table 2. Birth Defects Surveillance Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health InvestigationsNameBrief DescriptionSponsoring OrganizationData YearsURL (Accessed as of June 1, 2016)Florida Birth Defects Registry (FBDR)Statewide population‐based birth defects surveillance program for live‐born infants ≤ age 1 year; multiple data sources & linkages, including hospital & ambulatory discharge data, Children's Medical Services Florida, vital records, other administrative and clinical dataFlorida Department of Health1999–presenthttp://fbdr.org/Metropolitan Atlanta Congenital Defects Program (MACDP)Population‐based birth defects surveillance program for live‐born & stillborn infants, fetuses, and children diagnosed up to 6 years of age born to residents of metropolitan Atlanta, Georgia; multiple clinical data sources with linkage to vital records; active case finding, review and classification of CHDsCenters for Disease Control and Prevention—National Center on Birth Defects and Developmental Disabilities1967–presenthttp://www.cdc.gov/ncbddd/birthdefects/macdp.htmlNational Birth Defects Prevention Network (NBDPN) Data RepositoryData registry from 12 birth defect surveillance systems (including FBDR and MACDP) collaborating on birth defects surveillance, research, and prevention projectsNational Birth Defects Prevention Network1998–2007http://www.nbdpn.org/Table 3. Clinical Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health InvestigationsNameBrief DescriptionSponsoring OrganizationData YearsURL (Accessed as of June 1, 2016)Congenital Cardiac Catheterization Outcomes Project (C3PO)*Database of patient and procedural characteristics on catheterization procedures performed for congenital & acquired heart disease in infants, children, and adults at 15 pediatric heart centersBoston Children's Hospital Cardiovascular Program2007–presenthttps://c3po-qi.chboston.orgCongenital Cardiac Interventional Study Consortium (CCISC)*Registry for demographic and procedural information on patients undergoing diagnostic & interventional cardiac catheterizations for congenital heart disease (CHD)Children's Hospital of Michigan Foundation2005–2010https://ccisc.med.wayne.edu/Congenital Evaluation, Reporting, and Tracking Endeavor (CONGENERATE)*Database for providers of adults with CHD for multicenter collaboration, research, & quality metric initiativesMcGill University, University of Sherbrooke, University of Montreal2010–presenthttp://www.congenerate.org/Congenital Heart Surgeons Society (CHSS) Database*Database for multi‐institutional clinical studies evaluating surgical interventions for CHD. Goals: increase, correlate, & disseminate knowledge of physiology, pathology and therapyCongenital Heart Surgeons' Society (CHSS)1985–presenthttp://www.chssdc.org/IMproving Pediatric and Adult Congenital Treatments (IMPACT™) Registry*Registry of demographics, management & outcomes of pediatric and adult patients with CHD undergoing diagnostic & intervention cardiac catheterizations and electrophysiology procedures at 55 sites; data for performance measurement, benchmarking, and quality improvement initiativesAmerican College of Cardiology/National Cardiovascular Data Registry2010–presenthttps://www.ncdr.com/webncdr/impact/homeMid‐Atlantic Group of Interventional Cardiology (MAGIC)*Registry of outcomes for specific cardiac interventional catheterizations for CHDs and pulmonary hypertension at 14 sitesJohns Hopkins University2003–2010http://www.magicgroup.org/html/news.htmlNational Pediatric Cardiology Quality Improvement Collaborative*Providers & family network that collects data, conducts research, & uses quality improvement science to improve outcomes; multicenter database to identify care variations & best practices, and test hypothesesJoint Council on Congenital Heart Disease2006–presenthttps://jcchdqi.org/Organ Procurement Transplant Network DatabaseDatabase containing secure data on all wait lists, organ donation & transplant events in the US; database can be queried online, and reports availableUnited Network for Organ Sharing (UNOS)1987–presenthttp://optn.transplant.hrsa.gov/Pediatric Cardiac Care Consortium (PCCC)*Registry of cardiac catheterizations, surgeries, & autopsies for infants, children, and adults with congenital or acquired heart disease from 57 pediatric cardiac centers; includes outcomes & longitudinal patient trackingUniversity of Minnesota1982–2011http://www.pcccweb.comPediatric Cardiac Critical Care Consortium (PC4)*Consortium of pediatric cardiac critical care, cardiac surgery, & cardiology that collects data on outcomes & practice, provides performance feedback, and promotes improvement based on empirical analysis and collaborative learningNational Institutes of Health/University of Michigan/Participating Sites2009–presenthttp://pc4quality.org/Pediatric Heart Network (PHN)*Collaboration of clinical sites & a data coordinating center that conducts research to improve outcomes and quality of life of children with congenital and acquired heart disease. Centers follow study protocol to collect identical data and treat patients in similar waysNational Heart, Lung, & Blood Institute2001–presenthttp://www.pediatricheartnetwork.com/Pediatric Heart Transplant Study (PHTS) Database*International, prospective, event driven database for research in the field of pediatric heart transplantation. PHTS advances the science & treatment of children during listing for and following heart transplantationUniversity of Alabama Birmingham School of Medicine1993–presenthttp://www.uab.edu/medicine/phts/Society of Thoracic Surgeons Congenital Heart Surgery Database (STS‐CHSD)*Database for quality improvement, patient safety, and research which contains data on >95% of pediatric cardiac operations in the US. Represents120 United States pediatric cardiac surgery hospitals & 3 in CanadaSociety of Thoracic Surgeons1994–presenthttp://www.sts.org/sts-national-database/database-managers/congenital-heart-surgery-databaseVirtual Pediatric Intensive Care Unit Systems, LLC (VPS)Collaboration of 115 hospitals to improve critical care quality& outcomes through actionable reports, data management, & researchNone1998–presenthttp://www.myvps.org/about-vps.htmlWestern Canadian Children's Heart Network Database (WCCHN)*Database containing data on all diagnosed pediatric heart disease and CHD cases for 5 Canadian sites and adult CHD cases in 1 siteWestern Canadian Children's Heart Network2006–presenthttp://www.westernchildrensheartnetwork.ca/*Denotes cardiac‐specific databases.Table 4. Survey Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health InvestigationsNameBrief DescriptionSponsoring OrganizationData YearsURL (Accessed as of June 1, 2016)American Community Survey (ACS)Part of the Decennial Census Program, it is a nationwide continuous survey sent to a small percentage of US households to gather demographic, housing, social, and economic data and provide yearly reportsUnited States Decennial Census Program—Census Bureau2005–presenthttp://www.census.gov/programs-surveys/acs/Decennial CensusSurvey of all US households done every 10 years, consisting of short and long forms. As of 2010, only the short‐form is done—the long form replaced by the ACS. Data are used for numerous purposesUnited States Census Bureau1790–presenthttps://www.census.gov/Medical Expenditure Panel Survey (MEPS)Survey of households to estimate use of health services, cost, payment, & availability; surveys have 3 components: core household, insurance/employer, and the medical providerAgency for Healthcare Research and Quality (AHRQ)1996–presenthttp://meps.ahrq.gov/mepsweb/National Health Interview Survey (NHIS)Survey of households to estimate the amount, distribution, & effects of illness & disability in the US across demographics and socioeconomic status; updated questions on select topics; main source of health information on the US populationCenters for Disease Control and Prevention—National Center for Health Statistics1957–presenthttp://www.cdc.gov/nchs/nhis.htmNational Survey on Children with Special Health Care Needs (NS‐CSHCN)Random sample survey of households in all states to assess prevalence & impact of special healthcare needs among children in the US; survey has core & special topic areas such as CHDsCenters for Disease Control and Prevention—National Center for Health Statistics—Maternal Child Health Bureau2000, 2005, 2009http://www.cdc.gov/nchs/slaits/cshcn.htmTable 5. Combined Database Examples in the United States and Canada With Data From 1990 Onward for Potential Use in Congenital Heart Defects Public Health InvestigationsNameBrief DescriptionSponsoring OrganizationData YearsURL (Accessed as of June 1, 2016)Administrative and ClinicalHealthcare Systems Research Network (HCSRN)Collaboration of 18 integrated healthcare delivery systems implementing research findings in clinical practice; working over a broad scope of indicators, they aim to develop an extensive and usable databaseNone2006–presenthttp://www.hcsrn.org/en/Pediatric Health Information System Plus (PHIS+)Database augmenting the existing PHIS (see Table 1) database by linking electronic laboratory and radiology reports from 6 of the 49 Children's Hospital Association hospitals to conduct clinical comparative effectiveness research projectsAgency for Healthcare Research and Quality (AHRQ) and Children's Hospital Association2009–2012http://www.prisnetwork.org/research/phis_plus.htmlAdministrative and SurveyNational Ambulatory Medical Care Survey (NAMCS)National sample survey of nonfederal office‐based physicians to provide data on ambulatory medical care services in the USCDC*—National Center for Health Statistics1973–presenthttp://www.cdc.gov/nchs/ahcd/about_ahcd.htmNational Hospital Ambulatory Medical Care Survey (NHAMCS)National sample survey of hospital emergency, outpatient, hospital‐based, & nonhospital ambulatory surgery centers; provides data on care at hospital‐based ambulatory services and ambulatory surgical centersCDC*—National Center for Health Statistics1992–presenthttp://www.cdc.gov/nchs/ahcd/about_ahcd.htmNational Hospital Discharge Survey (NHDS)Probability survey of inpatients discharged from nonfederal short‐stay US hospitals; provides national estimates of hospital inpatient servicesCDC*—National Center for Health Statistics1965–2010http://www.cdc.gov/nchs/nhds.htmNational Hospital Care Survey (NHCS)Survey combining data from NHAMCS, NHDS, and drug abuse networkCDC*—National Center for Health Statistics2011–presenthttp://www.cdc.gov/nchs/nhcs.htmBirth Defect Surveillance and SurveyBirth Defects Study To Evaluate Pregnancy exposureS (BD‐STEPS)Multisite population‐based, case‐control study of 17 birth defects, building on findings from the NBDPS (see below)Centers for Birth Defects Research and Prevention2014–presenthttp://bdsteps.org/National Birth Defects Prevention Study (NBDPS)Multisite population‐based, case‐control study of 30 birth defects; includes maternal interview & cheek cell specimens from family members; excludes syndromes & chromosomal abnormalitiesCenters for Birth Defects Research and Prevention1997–2011http://www.nbdps.org/Pregnancy Health Interview Study (Birth Defects Study)Multisite case‐control study of birth defects & newborn health; focuses on environmental exposures (primarily medications) in pregnancy; includes maternal interview, medical record release; genetic specimens 1992–2008Slone Epidemiology Center at Boston University1979–presenthttp://www.bu.edu/slone/research/studies/phis/*Centers for Disease Control and Prevention.Administrative Healthcare DatabasesAdministrative healthcare databases are generally developed from facility records or health insurance claims for billing purposes and/or to document healthcare provided; they are typically not designed for research purposes. Most are not specific to CHDs but still are useful for research and public health investigations related to CHDs. We identified 13 administrative healthcare databases (1 of which is cardiac specific) (Table 1), 2 administrative/clinical databases, and 4 administrative/survey databases (Table 5).Facility‐based administrative healthcare databases include all patients at a certain institution, regardless of payer, and may be able to identify a person over multiple encounters. However, these databases do not have data on outside resources utilized by that individual. Facility‐based databases usually include the nominal charges for the services provided, although the provision of hospital or aggregated department‐specific cost‐to‐charge ratios allows the estimation of facility‐perspective costs.3 On the other hand, claims‐derived administrative healthcare databases cover healthcare use by all enrollees in certain health plans, regardless of where the care is received, and can follow individuals for as long as they are plan beneficiaries. Claims databases typically include millions of enrollees and by definition do not include nonenrollees and the uninsured. These excluded groups may be needed in a study, depending on the particular public health issue being addressed. Claims‐based databases capture billed charges and actual payments made, including payments made by health plans and enrollees.In general, administrative healthcare databases can provide large sample sizes, detailed resource utilization, and financial information, and are often population‐based to the extent they capture all patients in a geographic area or health plan. However, some persons may not use the healthcare system; thus, administrative healthcare databases may either overrepresent sicker patients or exclude those without access to care. Another limitation of US administrative healthcare databases is how data are coded. Typically, these databases use International Classification of Disease version 9 or 10 Clinical Modification (ICD‐9‐CM, ICD‐10‐CM) codes, which often lack sufficient detail to adequately characterize specific CHD phenotypes or procedures. Hence, researchers may be limited to investigating broad classes of CHDs or procedures. Administrative databases may also be difficult to access, because of restrictions and license fees, and to use, due to their size and need for strong programmers or computational power.3One example of multi‐institutional facility‐based databases is the Healthcare Cost and Utilization Project (HCUP) database developed and managed by the Agency for Healthcare Research and Quality (AHRQ) through a public‐private partnership. The cornerstone of HCUP is facility‐level inpatient and hospital outpatient discharge data that include diagnoses and procedure codes, admission source, discharge status, patient demographics, expected payment source, total billed hospital charges, estimated costs, length of stay, and specific hospital characteristics. Hospitals provide these data on all patients, including self‐pay and uninsured patients, to state‐level entities that create state‐specific hospital discharge databases. Under Memoranda of Agreements, these entities voluntarily share their files with AHRQ, and these files become part of HCUP. For 2013, the most current data year available, 48 states (accounting for 97% of the US population) participated in HCUP.4 The states decide which data elements are included in standardized State Inpatient Databases (SID) and whether AHRQ can release their files directly to users. For 2013, SID files for 28 states were available directly from AHRQ; files for the remaining states can potentially be obtained from the state‐level organizations.4 Nationally representative databases based on aggregated SID data include the annual Nationwide/National Inpatient Sample (NIS) and the triennial Kids' Inpatient Sample (KID). Other HCUP databases that capture CHD care are listed in Table 1. Copies of the HCUP databases can be purchased; aggregated data from select HCUP databases are freely available online at the HCUPnet site (http://hcupnet.ahrq.gov). Several health service research studies have used HCUP data to assess data on incidence, outcomes, facility costs, and factors related to hospitalization for individuals with CHDs.5, 6, 7, 8, 9, 10Health insurance claims databases include public insurers an
Referência(s)