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P U B L I S H E D B Y E L S E V I E R

DATA STANDARDS

2017 AHA/ACC Key Data Elementsand Definitions for AmbulatoryElectronic Health Records inPediatric and Congenital CardiologyA Report of the American College of Cardiology/American Heart AssociationTask Force on Clinical Data Standards

Developed in Collaboration With the American Academy of Pediatrics, Association of European

Paediatric Cardiologists, Child Health Corporation of America*, Congenital Cardiac Anesthesia

Society, Congenital Heart Surgeons’ Society, International Society for Nomenclature of Paediatric

and Congenital Heart Disease, National Association of Children’s Hospitals and Related Institutions*,

and The Society of Thoracic Surgeons

Writing Jeffrey R. Boris, MD, FACC, Chair
CommitteeMembers Marie J. Béland, MD, CMy
Lisa J. Bergensen, MD, MPH, FACCSteven D. Colan, MD, FACCzJoanna Dangel, MD, PHDCurtis J. Daniels, MD, FACCChristopher Davis, MDAllen D. Everett, MD, FACCRodney Franklin, MDxJ. William Gaynor, MD, FACCDarryl T. Gray, MD, SCD, FACC, FAHA

*Together with the National Association of Children’s Hospitals, these

Association (www.childrenshospitals.org).

The opinions expressed in this document are those of the authors and do

Quality, the National Heart, Lung, and Blood Institute, or the U.S. Departm

This document was approved by the American College of Cardiology Bo

Advisory and Coordinating Committee on June 7, 2017, and the American H

The American College of Cardiology requests that this document be cited as

Davis C, Everett AD, Franklin R, Gaynor JW, Gray DT, Hirsch-Romano JC, Jaco

Martin GR, Matherne GP, Mavroudis C, McCardle K, Pearson GD, Rosenthal G

3rd, Weinberg PM. 2017 AHA/ACC key data elements and definitions for am

report of the American College of Cardiology/American Heart Association T

This article is copublished in Circulation: Cardiovascular Quality and Outc

Copies: This document is availableon theWorldWideWeb sites of theAmeri

(professional.heart.org). For copies of this document, please contact Elsevier

Permissions: Multiple copies, modification, alteration, enhancement, and

permission of the American College of Cardiology. Requests may be compl

author-agreement/obtaining-permission).

Jennifer C. Hirsch-Romano, MD, FACCkJeffrey P. Jacobs, MD, FACC{Marshall Jacobs, MD, FACC#Howard Jeffries, MD, FACC**Otto Nils Krogmann, MDEdwin A. Lomotan, MDLeo Lopez, MD, FACCAriane Marelli, MD, FACCGerard R. Martin, MD, FACCG. Paul Matherne, MD, FACCConstantine Mavroudis, MDKen McCardle

organizations have merged and now comprise the Children’s Hospital

not reflect the official position of the Agency for Healthcare Research and

ent of Health and Human Services.

ard of Trustees on May 25, 2017, the American Heart Association Science

eart Association Executive Committee on June 30, 2017.

follows: Boris JR, Béland MJ, Bergensen LJ, Colan SD, Dangel J, Daniels CJ,

bs JP, Jacobs M, Jeffries H, Krogmann ON, Lomotan EA, Lopez L, Marelli A,

, Scott JS, Serwer GA, Seslar SS, Shaddy R, Slesnick T, Vener DF, Walters HL

bulatory electronic health records in pediatric and congenital cardiology: a

ask Force on Clinical Data Standards. J Am Coll Cardiol 2017;70:1029–95.

omes.

canCollegeofCardiology (www.acc.org) and theAmericanHeartAssociation

Reprint Department, fax 212-633-3820, e-mail [email protected].

/or distribution of this document are not permitted without the express

eted online via the Elsevier site (http://www.elsevier.com/about/policies/

http://www.childrenshospitals.org

http://www.acc.org

http://professional.heart.org

mailto:[email protected]

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http://www.elsevier.com/about/policies/author-agreement/obtaining-permission

http://crossmark.crossref.org/dialog/?doi=10.1016/j.jacc.2017.06.027&domain=pdf

http://dx.doi.org/10.1016/j.jacc.2017.06.027

Boris et al. J A C C V O L . 7 0 , N O . 8 , 2 0 1 7

2017 Pediatric and Congenital Cardiology Data Standard A U G U S T 2 2 , 2 0 1 7 : 1 0 2 9 – 9 5

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Gail D. Pearson, MD, SCD, FACCGeoffrey Rosenthal, MD, FACCJohn S. Scott, MD, FACCGerald A. Serwer, MD, FACCyyStephen S. Seslar, MD, PHDRobert Shaddy, MD, FACCTimothy Slesnick, MDDavid F. Vener, MDzzHenry L. Walters III, MDPaul M. Weinberg, MD

yInternational Society for Nomenclature of Paediatric and

Congenital Heart Disease Representative. zChild Health Corporation

of America Representative. xAssociation of European Pediatric

Cardiologists Representative. kThe Society of Thoracic Surgeons

Representative. {ACC/AHA Task Force on Clinical Data Standards

Liaison to the Writing Committee. #Congenital Heart Surgeons’

Society Representative. **National Association of Children’s

Hospitals and Related Institutions Representative. yyAmerican

Academy of Pediatrics Representative. zzCongenital CardiacAnesthesia Society Representative.

ACC/AHA TaskForce on ClinicalData Standards

Biykem Bozkurt, MD, PhD, FACC, FAHA, C
hair
H. Vernon Anderson, MD, FACC, FAHA
Garth N. Graham, MD, FACCHani Jneid, MD, FACC, FAHAGail K. Jones, MDDavid Kao, MD, FAHAMichael Kutcher, MD, FACC
Leo Lopez, MD, FACCGregory Marcus, MD, FACC, FAHAJennifer Rymer, MDJames E. Tcheng, MD, FACCWilliam S. Weintraub, MD, MACC, FAHAxx

xxTask Force Chair during the development of this document.

TABLE OF CONTENTS

PREAMBLE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1031

1. INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1032

2. METHODOLOGY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1034

2.1 Writing Committee Composition . . . . . . . . . . . . . 1034

2.2 Relationships With Industry andOther Entities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1034

2.3 Development of Terminology Concepts . . . . . . . . 1034

2.4 Consensus Development . . . . . . . . . . . . . . . . . . . . 1034

2.5 Relation to Other Standards . . . . . . . . . . . . . . . . . 1034

2.6 Peer Review and Public Review . . . . . . . . . . . . . . 1035

3. DATA ELEMENTS AND DEFINITIONS . . . . . . . . . . . 1035

3.1 History of Present Illness . . . . . . . . . . . . . . . . . . . 1035

3.2 Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1035

3.3 Past Medical History . . . . . . . . . . . . . . . . . . . . . . . 1035

3.4 Physical Examination . . . . . . . . . . . . . . . . . . . . . . 1035

3.5 Common Cardiac Diagnoses . . . . . . . . . . . . . . . . . 1035

APPENDIX 1

Author Relationships With Industry and Other Entities(Relevant)—2017 AHA/ACC Key Data Elements and

Definitions for Ambulatory Electronic Health Recordsin Pediatric and Congenital Cardiology . . . . . . . . . . . 1037

APPENDIX 2

Reviewer Relationships With Industry and OtherEntities—2017 AHA/ACC Key Data Elements andDefinitions for Ambulatory Electronic Health Recordsin Pediatric and Congenital Cardiology . . . . . . . . . . . 1038

APPENDIX 3

History of Present Illness . . . . . . . . . . . . . . . . . . . . . . . 1039

APPENDIX 4

Risk Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1050

APPENDIX 5

Past Medical History . . . . . . . . . . . . . . . . . . . . . . . . . . 1062

APPENDIX 6

Physical Examination . . . . . . . . . . . . . . . . . . . . . . . . . . 1071

A. Vital Signs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1071

B. Cardiac Examination . . . . . . . . . . . . . . . . . . . . . 1072

C. Extracardiac Examination . . . . . . . . . . . . . . . . . 1083

APPENDIX 7

Common Cardiac Diagnoses . . . . . . . . . . . . . . . . . . . . 1088

J A C C V O L . 7 0 , N O . 8 , 2 0 1 7 Boris et al.A U G U S T 2 2 , 2 0 1 7 : 1 0 2 9 – 9 5 2017 Pediatric and Congenital Cardiology Data Standard

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PREAMBLE

The American College of Cardiology (ACC) and theAmerican Heart Association (AHA) support their mem-bers’ goal to improve the care of patients with cardio-vascular disease through professional education,research, and development of guidelines and standardsand by fostering policies that support optimal patientoutcomes. The ACC and AHA recognize the importance ofthe use of clinical data standards for patient management,assessment of outcomes, and conduct of research, and theimportance of defining the processes and outcomes ofclinical care, whether in randomized trials, observationalstudies, registries, or quality improvement initiatives.

Clinical data standards strive to define and standardizedata relevant to clinical concepts, with the primary goal offacilitating uniform data collection by providing a plat-form of clinical terms with corresponding definitionsand data elements. Broad agreement on a commonvocabulary with reliable definitions used by all is vital topool and/or compare data across clinical trials to promoteinteroperability with electronic health records (EHRs) andto assess the applicability of research to clinical practice.The ultimate purpose of clinical data standards is tocontribute to the infrastructure necessary to accomplishthe ACC’s mission of fostering optimal cardiovascular careand disease prevention and the AHA’s mission of buildinghealthier lives, free of cardiovascular diseases and stroke.

The specific goals of clinical data standards are:

1. To establish a consistent, interoperable, and universalclinical vocabulary as a foundation for both clinicalcare and clinical research, including clinical trials

2. To promote the ubiquitous use of EHRs and facilitatethe exchange of data across systems through harmo-nized, standardized definitions of key data elements

3. To facilitate the further development of clinical regis-tries, quality and performance improvement programs,outcomes evaluations, and clinical research, includingthe comparison of results within and across theseinitiatives

The key elements and definitions are intended tofacilitate the consistent, accurate, and reproducible cap-ture of clinical concepts; standardize the terminologyused to describe cardiovascular diseases and procedures;create a data environment conducive to the assessment ofpatient management and outcomes for quality and per-formance improvement and clinical and translationalresearch; and increase opportunities for sharing dataacross disparate data sources. The ACC/AHA Task Forceon Clinical Data Standards (Task Force) selects cardio-vascular conditions and procedures that will benefit fromcreation of a standard dataset. Subject matter experts areselected to examine/consider existing standards and

develop a comprehensive, yet not exhaustive, standarddataset. When a data collection effort is undertaken, onlya subset of the elements contained in a clinical datastandards listing may be needed, or conversely, users maywant to consider whether it may be necessary to collectsome elements not listed. For example, in the setting of arandomized clinical trial of a new drug, additional infor-mation would likely be required regarding study proced-ures and drug therapies.

The ACC and AHA recognize that there are othernational efforts to establish clinical data standards, andevery attempt is made to harmonize newly publishedstandards with existing standards. Writing committeesare instructed to consider adopting or adapting existingnationally and internationally recognized data standardsif the definitions and characteristics are useful andapplicable to the set under development. In addition, theACC and AHA are committed to continually expandingtheir portfolio of data standards and will create newstandards and update existing standards as needed tomaintain their currency and promote harmonization withother standards as health information technology andclinical practice evolve.

The Health Insurance Portability and AccountabilityAct privacy regulations, which went into effect in April2003, have heightened all practitioners’ awareness of ourprofessional commitment to safeguard our patients’ pri-vacy. The Health Insurance Portability and AccountabilityAct privacy regulations (1) specify which informationelements are considered “protected health information.”These elements may not be disclosed to third parties(including registries and research studies) without thepatient’s written permission. Protected health informa-tion may be included in databases used for healthcareoperations under a data use agreement. Research studiesusing protected health information must be reviewed byan institutional review board or a privacy board.

We have included identifying information in all clinicaldata standards to facilitate uniform collection of theseelements when appropriate. For example, a longitudinalclinic database may contain these elements because ac-cess is restricted to the patient’s caregivers. Conversely,registries may not contain protected health informationunless each patient grants specific permission. Thesefields are indicated as protected health information in thedata standards.

In clinical care, caregivers communicate with eachother through a common vocabulary. In an analogousfashion, the integrity of clinical research depends on firmadherence to prespecified procedures for patient enroll-ment and follow-up; these procedures are guaranteedthrough careful attention to definitions enumerated inthe study protocol, case report forms, and clinical eventcommittee charters. When data elements and definitions



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are standardized across studies, comparison, pooledanalysis, and meta-analysis are enabled, thus deepeningour understanding of individual studies.

The recent development of quality performance mea-surement initiatives, particularly those for which thecomparison of providers is an implicit or explicit aim, hasfurther raised awareness about the importance of datastandards. Indeed, a wide audience, including nonmed-ical professionals such as payers, regulators, and con-sumers, may draw conclusions about care and outcomes.To understand and compare care patterns and outcomes,the data elements that characterize them must be clearlydefined, consistently used, and properly interpreted.

Biykem Bozkurt, MD, PhD, FACC, FAHAChair, ACC/AHA Task Force on Clinical Data Standards

1. INTRODUCTION

This document creates the first extensive data dictionary,with data elements and definitions, specifically for use inthe outpatient—or ambulatory—domain of pediatric andcongenital cardiology. It is 1 of 16 domains of mutual in-terest identified in pediatric cardiology and congenitalcardiac disease necessary to build a framework that en-ables the goal of interoperable data exchange to occur.The other domains include: congenital heart defectnomenclature, adult congenital heart disease, criticalcare, cardiomyopathy, cardiac transplantation, pulmo-nary hypertension, congenital cardiac surgery, echocar-diography, diagnostic and interventional catheterization,exercise stress testing and physiology, electrophysiology,cardiac magnetic resonance imaging, fetal physiology,perfusion, and cardiac anesthesia. The reason that thisdomain was chosen first was that there are other nascentdata dictionaries that capture, or at least overlap with,other domains in our field. However, outpatient cardiol-ogy previously has had limited, if any, attention to itsdata structure, despite the fact that patients spend thevast majority of their life in this area of care.

The need for a master set of data elements and defi-nitions is of topical interest for the pediatric andcongenital heart disease clinician where data sharing iscritical to identify best practices, develop evidence-based guidelines, and determine statistical significancein our patient populations. There is a wide range ofdisease processes across a relatively small set of patientsin pediatric and congenital heart disease; this fact is incontrast to adult cardiac disease where there is a largepopulation of patients who experience a more homoge-nous set of disease processes. In a year, a cardiac centerin adult medicine is likely to treat thousands of patientswho present with one of only a few disease processes.Adult cardiac medicine has successfully built clinicaldecision support tools, established data registries, and

achieved data pooling because of the large distributionof patients across these disease processes, and becausethere are common data standards. There are limitedlarge-scale observational data that can be used forevidence-based decisions and for cardiac research inoutpatients with pediatric and congenital heart disease(2). Getting to outcome measures in pediatric cardiologyand cardiac surgery is challenging; attaining evidence-based decision-making has been challenging, if noteven more challenging, although groups such as thePediatric Heart Network and the National PediatricCardiology Quality Improvement Collaborative (3) havebeen breaking down this barrier. There are manyobstacles within standardizing and sharing data in pe-diatric cardiac surgery—including variation in surgicaltechniques and skills, variations in perioperative care,variation in underlying anatomy, adequate risk stratifi-cation, nonavailability of natural history of unoperatedpatients in the present era, and insufficient patientnumbers—from which to draw statistically significantconclusions (4).

Pediatric and congenital cardiology and cardiovascularsurgery comprise a wholly separate set of diagnoses andprocedures compared with those of adult cardiology. Pe-diatric and congenital cardiac care begins at fetal cardi-ology through congenital as well as acquired pediatriccardiac disease, leads up to and through adult congenitalcardiac disease states, and also incorporates some aspectsof adult cardiac care. Several efforts to list congenitalcardiac disease, surgical interventions, and complicationshave been accomplished over the past 15 years includingefforts from the Association for European Paediatric andCongenital Cardiology, The Society of Thoracic Surgeons,and the European Association for Cardio-Thoracic Sur-gery. The combination of the data elements published bythe Association for European Paediatric and CongenitalCardiology with the set of data elements created by TheSociety of Thoracic Surgeons and European Associationfor Cardio-Thoracic Surgery (5) to give the IPCCC (Inter-national Paediatric and Congenital Cardiac Code) was ahistoric effort in delineating and mapping the variousnomenclatures used in the field. Common nomenclatureserves as an important linkage across clinical data regis-tries and for EHR data warehousing. Specifically, a num-ber of terms used in this data dictionary harmonize withthe living document that is the IPCCC. The IPCCC has notdetermined the details of all of the terms and definitionsassociated with the ambulatory environment. Thus,further harmonization will be important as this workprogresses.

At this juncture, evidence-based guidelines for theinpatient and outpatient care of children with congenitalheart disease are generally lacking, and pediatric cardi-ologists are often “on their own” when trying to deliver


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the best quality of care to these children. Compoundingthis problem, there are often insufficient patients at anyone heart center to accumulate sufficient evidence todefine optimal patient care. Clinical outcome measures todetermine the effect of inpatient and outpatient care areevolving slowly, and there is no universal standardizedclinical record to monitor a patient’s course, long-termoutcomes, and comorbidities or quality-of-life in-dicators. Collaborative multi-institutional efforts arerequired to improve the quality of care for children withcongenital heart disease; several have already begun,including the IMPACT (Improving Pediatric and AdultCongenital Treatments) registry, the Pediatric HeartNetwork and the National Pediatric Cardiology QualityImprovement Collaborative. Clinical data registries,which use data for comparative benchmarking, trans-lational research, and quality improvement, have pro-vided a useful model to improve care and to measureclinical outcomes. Many of these societal and multi-institutional database registries exist in the specialtyfields of pediatric and congenital heart disease. Much ofour work in defining the minimum data set for the pedi-atric and congenital heart disease patient will be through“harmonization” and identification of gaps and overlapsin these already existing registries. The multiple societalregistries and multi-institutional clinical data registrieswill provide much of the foundation elements to the datadictionary as needed for the pediatric and congenitalheart disease patient. The Multi-Societal Database Com-mittee for Pediatric and Congenital Heart Disease begansome of this work in developing strategies to link regis-tries and databases. This committee was established in2005 with the goal of providing the infrastructure, span-ning geographic and subspecialty boundaries, andcreating collaboration between healthcare professionalinterested in the analysis of outcomes of treatmentsprovided to patients with congenital cardiac disease.Through a supplemental document published in Cardiol-ogy in the Young (5) and a series of annual meetings, thiscommittee offers definitions as standards across themultiple registries in pediatric and congenital heart dis-ease. There are >36 organizations and professional soci-eties that are invited and participate in these meetingsand activities. Many of these organizations and societiesprovide these proceedings or meeting agenda topics totheir respective clinical boards. As a result, many of theclinical registries in pediatric and congenital heart diseaseshare clinical nomenclature for disease classification andprocedural coding.

We use the term “EHR” as not only referring to thegeneric concept of such computer-based systems, butincludes the idea that a patient’s medical information anddiscrete data capture may be stored in multiple systems,with clinical data standards enabling the appearance of a

single repository. One of the greatest inefficiencies of thecurrent approach to measuring clinical quality indicatorsand clinical and translational research is the absence of aunifying infrastructure with streamlined, one-time datacollection, common data terms, and cooperative use ofdata shared among institutions and researchers. Clinicalquality outcomes assessment and research processestypically occur as independent, parallel endeavors. Forexample, clinical evaluation findings and managementdecisions, with accompanying test results, can be docu-mented in a clinic note, dictated into a letter forcommunication with others, coded for reimbursement,keyed into multiple web-based systems for qualityreporting, regulatory activities, and clinical trials, andlater be extracted from patient records to support addi-tional clinical or research needs. If uniform data stan-dards and terms supported by an EHR and across all thesedisparate systems were in place, the data could becaptured once in the clinical workflow and be madeavailable to all stakeholders. The current writing com-mittee understands that the entry of information into theEHR is performed by numerous medical personnel, manyof whom are not trained in the skills of accurately andconsistently entering data in a structured fashion. Thisdata entry is a fundamental source of data error withinthe EHR. Nevertheless, the hope is to leverage this data bycreating structured elements and definitions that can beincorporated into the EHR, and thus used in the future ina routine manner.

Taking a holistic view of the terminologies used in thecare of cardiac diseases, we look to the “ACCF/AHA 2011Key Data Elements and Definitions of a Base Cardiovas-cular Vocabulary for Electronic Health Records” (6) as ourguide in thinking about how our field approaches thisrequirement. However, there is need to create a separatedata set for pediatric and congenital disease patients.Children have unique developmental needs and theirparent-caregivers have informational needs that aredifferent from those of adults. Pharmacodynamic andmetabolic factors make processes in pediatric patientsdifferent than in adults. During early childhood, a child ismore likely to have multiple visits to the physician’s of-fice, and children see multiple specialists throughoutchildhood. Thus, there are indeed many characteristics ofpediatric care that differ from adult care. In addition tothe adult and pediatric differences in medical care, thereis also difference both in respective EHR design and inrespective data collection points. And, these characteris-tics often need to be captured differently in EHR systemsso that pediatricians and specialty providers benefit fromthe automation of clinical and developmental child healthinformation.

We therefore suggest the need to compile through theEHR the collective-comparative needs of the many



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clinical, medical, and surgical domains in the care of pe-diatric and congenital heart disease patients. Ourapproach takes us from cardiology clinic to cardiac diag-nostic imaging to interventional to cardiac critical care tocardiac care programs. Within each of these domains, wepresent the cohort perspective and/or clinical prevalence,the presence of current data registry and/or “shareability”of clinical data, and outline of future directions. We seethis plan as a first step toward achieving EHR data ex-change for the continuity of clinical care of the pediatricand congenital heart disease patient. As for future steps,we see the need for aligning the ACC and AHA pediatricdata set to the adult data set and for aligning the ACC andAHA pediatric data set to U.S. Meaningful Use data stan-dards. To do so, immediate next steps for the Task Forcewill involve further mapping of existing clinical dataregistries and clinical domain needs to better understandissues around common data standards, overlaps, and gapsin data content.

2. METHODOLOGY

2.1. Writing Committee Composition

The Task Force selected a writing committee chair andfacilitated the selection of members for the writing com-mittee. The writing committee consisted of 31 individualswho are experts in cardiovascular medicine, HER tech-nologies, and medical informatics, and included repre-sentation from pediatric and congenital cardiovascularmedicine and surgery.

2.2. Relationships With Industry and Other Entities

The Task Force makes every effort to avoid actual or po-tential conflicts of interest that might arise as a result ofan outside relationship or a personal, professional, orbusiness interest of any member of the writing commit-tee. Specifically, all members of the writing committee arerequired to complete and submit a disclosure formshowing all such relationships that could be perceived asreal or potential conflicts of interest. These statements arereviewed by the Task Force and updated when changesoccur. Authors’ and peer reviewers’ relationships withindustry and other entities pertinent to this data stan-dards document are disclosed in Appendixes 1 and 2,respectively. In addition, for complete transparency, thedisclosure information of each writing committee mem-ber—including relationships not pertinent to this docu-ment—is available as an online supplement. The work ofthe writing committee was supported exclusively by theACC and AHA without commercial support. Writingcommittee members volunteered their time for this effort.Meetings of the writing committee were confidential andattended only by committee members and staff.

2.3. Development of Terminology Concepts

The terminology for this document has been derived from2 primary sources. The first was a set of data elementscreated by the chair of this writing committee for usespecifically in an outpatient clinical practice that could bescalable for use. The second comes from the InternationalSociety for Nomenclature of Paediatric and CongenitalHeart Disease that initially created a set of data elementsto make the IPCCC more complete. However, it hadnot specifically included definitions. These 2 sourcedocuments were then harmonized and divided intosmaller sections, consistent with the typical method ofdocumentation within the medical record. These smallersections included the history of the present illness, riskfactors, the past medical history, the physical examina-tion, and common cardiac diagnoses. Our subject matterexperts then reviewed and refined these data elementsand definitions to derive a data dictionary that would becomplete for the majority of patients seen in the outpa-tient setting.

2.4. Consensus Development

The Task Force established the writing committee ac-cording to the processes described in the Task Force’smethodology statement (7). The responsibility of thewriting committee was to review and refine the list of thecandidate terms identified for ambulatory EHR for pedi-atric and congenital cardiology, and to harmonize theattributes and other informatics formalisms required toattain interoperability of the terms. The writing commit-tee’s work was accomplished through series of telecon-ferences and extensive e-mail correspondences. Thevetted set of terminology resulted in the tabular dataelements and definitions in Appendixes 3 to 7 (8–37).

2.5. Relation to Other Standards

The writing committee reviewed the “ACCF/AHA 2011Key Data Elements and Definitions of a Base Cardiovas-cular Vocabulary for Electronic Health Records” (6) alongwith available published ACC/AHA clinical data stan-dards. Key sources such as the National Cancer InstituteEnterprise Vocabulary Services (38), the Logical Obser-vation Identifiers Names and Codes (LOINC) (39), and theClinical Data Interchange Standards Consortium (CDISC)(40) were also reviewed. Most existing published defi-nitions were adopted, and a few were adjusted to elim-inate verbiage and improve definitions. New definitionswere also proposed by the writing committee for termi-nology that needed to be defined. Through thisconsensus work, the writing committee anticipates thatthis vocabulary set will facilitate uniform adoption ofthese terms by the various clinical, research, and EHRcommunities.

http://jaccjacc.acc.org/Clinical_Document/Comprehensive_RWI-2017_AHA-ACC_Pediatric_and_Congenital_EHR_DS.PDF


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2.6. Peer Review and Public Review

This document—“2017 AHA/ACC Key Data Elementsand Definitions for Ambulatory Electronic Health Re-cords in Pediatric and Congenital Cardiology”—wasreviewed by official reviewers nominated by the ACCand AHA. To increase its applicability further, thedocument was posted on the ACC website for a 30-daypublic comment period from July 22, 2016, to August22, 2016. This document was approved for publicationby the ACC Board of Trustees on May 25, 2017, by theAHA Science Advisory and Coordinating Committee onJune 7, 2017, and by the AHA Executive Committee onJune 30, 2017. The writing committee anticipates thatthese data standards will require review and updatingin the same manner as other published clinical practiceguidelines, performance measures, and appropriateuse criteria. The writing committee will therefore re-view the set of data elements periodically, beginningwith the first anniversary of publication of the stan-dards, to ascertain whether modifications should beconsidered.

3. DATA ELEMENTS AND DEFINITIONS

The writing committee identified pediatric and congenitalterms for EHRs. This document outlines these terms inAppendixes 3 to 7:

1. History of Present Illness2. Risk Factors3. Past Medical History4. Physical Examination5. Common Cardiac Diagnoses

3.1. History of Present Illness

The history of the present illness is the portion of theclinical evaluation that brings the patient into the physi-cian’s office for assessment. It can be an initial visit or forfollow-up after either observation or intervention. Thecontent and degree of documentation in this section iswhat drives the remainder of the examination as well asthe assessment and the decision-making process, andthus heavily influences subsequent reimbursement.Almost all medical and surgical specialties have a set oftypical or frequently seen diagnoses. This section helps toorganize historical factors required to correctly assessthese diagnoses.

3.2. Risk Factors

The concept of risk factors includes those issues that mayexist in the patient, arise in the patient, or be conferred byfamily history that increase the risk of further cardiacdisease or complications associated with the heart.

3.3. Past Medical History

Information gathered in the past medical history sectionhas an important part in the evaluation of the patient as itgives the background of medical and surgical conditionsagainst which the present illness exists. A patient with anegative past medical history may be evaluated differentlyfrom that of a patient who presents in the context of mul-tiple complex set of medical and/or surgical problems.Ensuring appropriate delineation of these problems is vital.

3.4. Physical Examination

The physical examination in cardiology can be one of themost diagnostic patient evaluations, giving informationthat can lead directly to a diagnosis, or at least to a rela-tively narrow differential diagnosis. Similarly, the com-bination of descriptors used to document the examinationcan communicate a clear picture of the cardiac assess-ment to another provider.

3.5. Common Cardiac Diagnoses

As mentioned previously, these “typically seen” di-agnoses are specific to the practice of pediatric cardiology,specifically in the outpatient setting. These are in addi-tion to the large variety of congenital cardiac defects,arrhythmias, and other pathologic processes that will befurther delineated and defined in subsequent documents.

PRESIDENTS AND STAFF

American College of Cardiology

Mary Norine Walsh, MD, FACC, PresidentShalom Jacobovitz, Chief Executive OfficerWilliam J. Oetgen, MD, MBA, FACC, Executive Vice Pres-

ident, Science, Education, Quality, and PublishingLara E. Slattery, MHS, Team Leader, ACC Scientific ReportingMichael Simanowith, Team Leader, Terminology and

StandardsAmelia Scholtz, PhD, Publications Manager, Science, Ed-

ucation, Quality, and Publishing

American College of Cardiology/American Heart Association

Katherine Sheehan, PhD, Director, Guideline Strategy andOperations

Maria Lizza D. Isler, BSMT, Associate, Clinical DataStandards

American Heart Association

Steven R. Houser, PhD, FAHA, PresidentNancy Brown, Chief Executive OfficerRose Marie Robertson, MD, FAHA, Chief Science and

Medicine OfficerGayle R. Whitman, PhD, RN, FAHA, FAAN, Senior Vice

President, Office of Science OperationsJody Hundley, Production Manager, Scientific Publishing,

Office of Science Operations



1036

R EF E RENCE S

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3. Gersony W. Decision making in pediatric cardiology;searching for the evidence. Progress in Pediatric Car-diology. 2003;18:89–95.

4. Pawade AK. Accountability and quality assurance inpaediatric cardiac surgery. Ann Card Anaesth. 2005;8:15–20.

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6. Weintraub WS, Karlsberg RP, Tcheng JE, et al. ACCF/AHA 2011 key data elements and definitions of a basecardiovascular vocabulary for electronic health re-cords: a report of the American College of CardiologyFoundation/American Heart Association Task Force onClinical Data Standards. J Am Coll Cardiol. 2011;58:202–22.

7. Hendel RC, Bozkurt B, Fonarow GC, et al. ACC/AHA2013 methodology for developing clinical data stan-dards: a report of the American College of Cardiology/American Heart Association Task Force on Clinical DataStandards. J Am Coll Cardiol. 2014;63:2323–34.

8. Stedman’s Medical Dictionary. 28th ed. Baltimore,MD: Wolters Kluwer; 2006.

9. The American Heritage Medical Dictionary. Boston,MA: Houghton Mifflin Company; 2007.

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11. Brignole M, Croci F, Menozzi C, et al. Isometricarm counter-pressure maneuvers to abort impendingvasovagal syncope. J Am Coll Cardiol. 2002;40:2053–9.

12. Buxton AE, Calkins H, Callans DJ, et al. ACC/AHA/HRS 2006 key data elements and definitions forelectrophysiological studies and procedures: a reportof the American College of Cardiology/American HeartAssociation Task Force on Clinical Data Standards(ACC/AHA/HRS Writing Committee to Develop DataStandards on Electrophysiology). J Am Coll Cardiol.2006;48:2360–96.

13. Chandrasekar A. Auscultation of lungs - method ofexam. Loyola University Medical Education Network.Available at: http://www.meddean.luc.edu/lumen/meded/medicine/pulmonar/pd/pstep29.htm. AccessedApril 2, 2016.

14. Fang J, O’Gara P. The history and physical exami-nation: evidence-based approach. In: Libby PP,Bonow RO, Mann DL, et al., editors. Braunwald’s Heart

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16. Hicks KA, Tcheng JE, Bozkurt B, et al. 2014 ACC/AHA key data elements and definitions for cardio-vascular endpoint events in clinical trials: a report ofthe American College of Cardiology/American HeartAssociation Task Force on Clinical Data Standards(Writing Committee to Develop Cardiovascular End-points Data Standards). J Am Coll Cardiol. 2015;66:403–69.

17. Jonas WB. Mosby’s Dictionary of Complementaryand Alternative Medicine. St. Louis, MO: Mosby/Elsevier, 2005.

18. Kernan WN, Ovbiagele B, Black HR, et al. Guide-lines for the prevention of stroke in patients withstroke and transient ischemic attack: a guideline forhealthcare professionals from the American HeartAssociation/American Stroke Association. Stroke. 2014;45:2160–236.

19. Krediet CTP, van Dijk N, Linzer M, et al. Manage-ment of vasovagal syncope: controlling or abortingfaints by leg crossing and muscle tensing. Circulation.2002;106:1684–9.

20. McConnell ME, Adkins SB 3rd, Hannon DW. Heartmurmurs in pediatric patients: when do you refer? AmFam Physician. 1999;60:558–64.

21. McCrindle BW, Rowley AH, Newburger JW, et al.Diagnosis, treatment, and long-term management ofKawasaki disease: a scientific statement for healthprofessionals from the American Heart Association.Circulation. 2017;135:e927–99.

22. Merkel SI, Voepel-Lewis T, Shayevitz JR, et al. TheFLACC: a behavioral scale for scoring postoperativepain in young children. Pediatr Nurs. 1997;23:293–7.

23. Mosby, Inc. Mosby’s Dictionary of Medicine,Nursing & Health Professions. St. Louis, MO: Mosby/Elsevier, 2009.

24. OSCE Skills. Peripheral vascular (PVS) examination.Available at: http://www.osceskills.com/e-learning/subjects/peripheral-vascular-examination/. AccessedMay 15, 2016.

25. Sarkar A. Bedside Cardiology. New Delhi, India:Jaypee Brothers Medical Publishers (P) Ltd; 2012.

26. Schlant RC, Hurst JW. Examination of the Precor-dium: Inspection and Palpation. Examination of theHeart, Part 3. Dallas, TX: American Heart Association;1990. Available at: https://bibliomed.bib.uniud.it/links/documenti-software-e-altro-materiale-scientifico/1examination_of_the_precordium-inspection_and_palpation-book_3.pdf. Accessed May 15, 2016.

27. Shaver JA, Leonard JJ, Leon DF. Auscultation of theHeart. Examination of the Heart, Part 4. Dallas, TX:

American Heart Association; 1990. Available at: https://bibliomed.bib.uniud.it/links/documenti-software-e-altro-materiale-scientifico/auscultation_of_the_heart-book_4.pdf. Accessed May 15, 2016.

28. Tavel ME. Cardiac auscultation. A glorious past–butdoes it have a future? Circulation. 1996;93:1250–3.

29. The Society of Thoracic Surgeons. STS NationalDatabase, Adult Cardiac Surgery Database. Available at:http://www.sts.org/sts-national-database/database-managers/adult-cardiac-surgery-database. AccessedMay 15, 2016.

30. The Stanford Medicine 25. Cardiac second heartsounds. Available at: http://stanfordmedicine25.stanford.edu/the25/cardiac.html. Accessed April 2,2016.

31. Thomas KE, Zimetbaum PJ. Electrophysiologystudy: indications and interpretations. In: Yan G-X,Kowey PR, editors. Management of CardiacArrhythmias. 2nd ed. New York, NY: Humana Press(Springer ScienceþBusiness Media, LLC); 2011:123–40.

32. Walker HK, Hall WD, Hurst JW. Clinical Methods:The History, Physical, and Laboratory Examinations.3rd ed. Boston, MA: Buttersworths; 1990.

33. Wong DL, Baker CM. Pain in children: comparisonof assessment scales. Pediatr Nurs. 1988;14:9–17.

34. World Health Organization. Substance abuse.Available at: http://www.who.int/topics/substance_abuse/en/. Accessed May 2, 2016.

35. YourDictionary. Lung-fields definition. Available at:http://www.yourdictionary.com/lung-fields. AccessedMay 15, 2016.

36. Otto CM, Bonow RO. Valvular heart disease. In:Bonow RO, Mann DL, Zipes DP, et al., editors. Braun-wald’s Heart Disease: A Textbook of CardiovascularMedicine. 9th ed. Philadelphia, PA: Elsevier HealthSciences; 2011:1468–529.

37. Loeys BL, Dietz HC, Braverman AC, et al. Therevised Ghent nosology for the Marfan syndrome.J Med Genet. 2010;47:476–85.

38. National Cancer Institute Enterprise VocabularyServer. Available at: https://ncit.nci.nih.gov/ncitbrowser/. Accessed May 15, 2016.

39. LOINC Test. Available at: http://www.loinc.org.Accessed December 12, 2014.

40. CDISC Glossary. Available at: http://cdisc.org/cdisc-glossary. Accessed December 12, 2014.

41. National Institute of Child Health and HumanDevelopment (NICHD). Available at: https://www.nichd.nih.gov/. Accessed May 15, 2016.

KEY WORDS ACC/AHA Clinical Data Standards,electronic health records, congenital heartdisease, pediatrics

http://refhub.elsevier.com/S0735-1097(17)37850-6/sref2






























https://ncit.nci.nih.gov/ncitbrowser/














http://www.meddean.luc.edu/lumen/meded/medicine/pulmonar/pd/pstep29.htm







http://HealthIT.gov

https://www.healthit.gov/providers-professionals/meaningful-use-definition-objectives






































http://www.osceskills.com/e-learning/subjects/peripheral-vascular-examination/




https://bibliomed.bib.uniud.it/links/documenti-software-e-altro-materiale-scientifico/1examination_of_the_precordium-inspection_and_palpation-book_3.pdf




https://bibliomed.bib.uniud.it/links/documenti-software-e-altro-materiale-scientifico/auscultation_of_the_heart-book_4.pdf






http://www.sts.org/sts-national-database/database-managers/adult-cardiac-surgery-database

http://www.sts.org/sts-national-database/database-managers/adult-cardiac-surgery-database

http://stanfordmedicine25.stanford.edu/the25/cardiac.html














http://www.who.int/topics/substance_abuse/en/

http://www.who.int/topics/substance_abuse/en/

http://www.yourdictionary.com/lung-fields











http://www.loinc.org

http://cdisc.org/cdisc-glossary

http://cdisc.org/cdisc-glossary

https://www.nichd.nih.gov/

https://www.nichd.nih.gov/


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Institutional,

APPENDIX 1. AUTHOR RELATIONSHIPS WITH INDUSTRY AND OTHER ENTITIES (RELEVANT)—

2017 AHA/ACC KEY DATA ELEMENTS AND DEFINITIONS FOR AMBULATORY ELECTRONIC HEALTH

RECORDS IN PEDIATRIC AND CONGENITAL CARDIOLOGY

Name Employment Consultant Speaker

Ownership/Partnership/Principal Research

Organizational, orOther Financial

BenefitExpertWitness

Jeffrey R. Boris (Chair) Children’s Hospital of Philadelphia—ClinicalProfessor of Pediatrics, Division of

Cardiology

None None None None None None

Marie J. Béland Montreal Children’s Hospital None None None None None None

Lisa J. Bergensen Boston Children’s Hospital—Associate inCardiology


Steven D. Colan Boston Children’s Hospital—Director ofClinical Research, Cardiology


Joanna Dangel Medical University of Warsaw—Professor ofPediatric Cardiology


Curtis J. Daniels Nationwide Children’s—Director Adolescentand Adult Congenital Heart Disease


Christopher Davis Rady Children’s Hospital San Diego—Director, Cardiopulmonary Exercise

Laboratory


Allen D. Everett Johns Hopkins All Children’s Hospital—Director of the Pediatric Proteome Center


Rodney Franklin Royal Brompton Hospital—ConsultantPaediatric Cardiologist


J. William Gaynor Children’s Hospital of Philadelphia—Director, Fetal Neuroprotection and

Neuroplasticity Program


Darryl T. Gray Agency for Healthcare Research andQuality—Medical Officer


Jennifer C.Hirsch-Romano

University of Michigan—Associate Director,Pediatric Cardiothoracic Intensive Care Unit


Jeffrey P. Jacobs Johns Hopkins All Children’s Hospital—Chief, Division of Cardiovascular Surgery


Marshall Jacobs Johns Hopkins Cardiac Surgery—Director,Pediatric Cardiac Surgery Outcomes

Research


Howard Jeffries Seattle Children’s Hospital—MedicalDirector, Clinical Effectiveness


Otto Nils Krogmann Klinik Für Kinderkardiologie None None None None None None

Edwin A. Lomotan Agency for Healthcare Research andQuality—Medical Officer


Leo Lopez Nicklaus Children’s Hospital—MedicalDirector, Noninvasive Cardiac Imaging


Ariane Marelli McGill University Health Centre—AssociateProfessor of Medicine


Gerard R. Martin Children’s National Health System—MedicalDirector of Global Health


G. Paul Matherne University of Virginia Children’s Hospital—Associate Chief Medical Officer


ConstantineMavroudis

Johns Hopkins Children’s Heart Surgery—Site Director


Ken McCardle Mount Sinai Health System—SeniorDirector, Clinical Operations


Gail D. Pearson National Heart, Lung, and Blood Institute—Director, Adult and Pediatric Cardiac

Research Program


Geoffrey Rosenthal University of Maryland—Director, Children’sHeart Program


Continued on the next page

Name Employment Consultant Speaker


Institutional,Organizational, orOther Financial

BenefitExpertWitness

John S. Scott Office of the Assistant Secretary ofDefense, Health Affairs—Program Director,

Clinical Informatics Policy


Gerald A. Serwer C.S. Mott Children’s Hospital—Professor,Pediatrics


Stephen S. Seslar Seattle Children’s Hospital—AssociateProfessor, Pediatric Cardiology


Robert Shaddy Chief Professor-Children’s Hospital ofPhiladelphia


Timothy Slesnick Emory University School of Medicine—Assistant Professor of Pediatrics


David F. Vener Texas Children’s Hospital—AssociateProfessor, Pediatrics and Anesthesiology


Henry L. Walters III Children’s Hospital of Michigan—Chief,Cardiovascular Surgery


Paul M. Weinberg Children’s Hospital of Philadelphia—Director, Cardiac Registry


This table represents the relationships of committee members with industry and other entities that were determined to be relevant to this document. These relationships werereviewed and updated in conjunction with all meetings and/or conference calls of the writing committee during the document development process. The table does not necessarilyreflect relationships with industry at the time of publication. A person is deemed to have a significant interest in a business if the interest represents ownership of $5% of the votingstock or share of the business entity, or ownership of $$5,000 of the fair market value of the business entity; or if funds received by the person from the business entity exceed 5% ofthe person’s gross income for the previous year. Relationships that exist with no financial benefit are also included for the purpose of transparency. Relationships in this table aremodest unless otherwise noted. Please refer to http://www.acc.org/guidelines/about-guidelines-and-clinical-documents/relationships-with-industry-policy for definitions of disclo-sure categories or additional information about the ACC Disclosure Policy for Writing Committees.

ACC indicates American College of Cardiology; and AHA, American Heart Association.

APPENDIX 1. CONTINUED



1038

APPENDIX 2. REVIEWER RELATIONSHIPS WITH INDUSTRY AND OTHER ENTITIES—2017 AHA/ACC

KEY DATA ELEMENTS AND DEFINITIONS FOR AMBULATORY ELECTRONIC HEALTH RECORDS IN

PEDIATRIC AND CONGENITAL CARDIOLOGY

Name Representation Employment Consultant Speaker


Institutional,Organizational,

or OtherFinancialBenefit

ExpertWitness

Geetha Raghuveer ACC Board ofGovernors

Professor of Pediatrics—Universityof Missouri–Kansas City School of

Medicine


David Kao AHA OfficialReviewer

Assistant Professor of Medicine—University of Colorado, Division of

Cardiology


Michael A. Kutcher Task Force LeadReviewer

Professor of Cardiology—WakeForest Baptist Health


Robert H. Beekman ContentReviewer

Professor of Pediatric Cardiology—Children’s Hospital Medical Center

of Cincinnati Ohio


Michele Grenier ContentReviewer

Professor of Pediatrics—Universityof Mississippi Medical Center


Michael Nihil ContentReviewer

Pediatric Cardiology—Baylor St.Luke’s Medical Center


This table represents the relationships of reviewers with industry and other entities that were disclosed at the time of peer review, including those not deemed to be relevant to thisdocument. The table does not necessarily reflect relationships with industry at the time of publication. A person is deemed to have a significant interest in a business if the interestrepresents ownership of $5% of the voting stock or share of the business entity, or ownership of $$5,000 of the fair market value of the business entity; or if funds received by theperson from the business entity exceed 5% of the person’s gross income for the previous year. Relationships that exist with no financial benefit are also included for the purpose oftransparency. Relationships in this table are modest unless otherwise noted. Names are listed in alphabetical order within each category of review. Please refer to http://www.acc.org/guidelines/about-guidelines-and-clinical-documents/relationships-with-industry-policy for definitions of disclosure categories or additional information about the ACC/AHA DisclosurePolicy for Writing Committees.

ACC indicates American College of Cardiology; and AHA, American Heart Association.

http://www.acc.org/guidelines/about-guidelines-and-clinical-documents/relationships-with-industry-policy




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Suggested

APPENDIX 3. HISTORY OF PRESENT ILLNESS

TerminologyConcept Definition

DataElement

PermissibleValues

Permissible ValueDefinitions

ParentField

Source ofDefinition Mapping

Chief Complaint

Chief Complaint The primary reasonfor a patient visit toa healthcareprovider.

n Murmurn Palpitationsn Chest painn Dizzinessn Syncopen Cyanosisn Screening for

cardiac conditionn Dyspnean Others

NCI Thesaurus (10)

Murmur An auscultated findingdescribing a series of audiblevibrations of varying intensity(loudness), frequency (pitch),quality, configuration, andduration created by turbulentblood flow in the heart orsurrounding vessels.

Palpitations An unpleasant sensation ofirregular and/or forcefulbeating of the heart.

NCI Thesaurus (10) NCI Code: C37999

Chest pain Discomfort felt in the upperabdomen, thorax, neck, orshoulders.

Dizziness A sensation of lightheadedness,unsteadiness, turning, spinning,or rocking.

NCI Thesaurus (10) NCI ThesaurusCode: C37943

Syncope Sudden loss of consciousnesswith loss of postural tone, notrelated to anesthesia withspontaneous recovery asreported by patient orobserver. Patient mayexperience syncope whensupine.

ACC/AHA/HRS 2006Key Data Elements andDefinitions forElectrophysiologicalStudies and Procedures(12)

Cyanosis A bluish or purplishdiscoloration of the skin andmucous membranes resultingfrom a reduced concentrationof oxygenated hemoglobin inthe blood.

NCI Thesaurus (10)

Screening forcardiac condition

Evaluation of relevantcoexisting conditions (e.g., T21,XO, Marfan, cleft palate, familyhistory).

Other

Chief Complaint – Timing

Chief Complaint –Onset

Time interval fromonset/recognitionof “chief complaint”to present

Integer field Number corresponding to timesince onset.

Units Appropriate time units forreported period, including days,weeks, months, or years.

Chief Complaint –Periodicity

Recurrence atregular intervals oftime of the chiefcomplaint.

Intermittent Periodically stopping andstarting.

NCI Thesaurus (10) NCI Code: C71325

Continuous Continuously present.



SuggestedData

ElementPermissible

ValuesPermissible Value

DefinitionsParentField


Chief Complaint –Frequency

The number ofoccurrences of aperiodic process in aunit of time.

Multiple times/day More than once per day.

Daily Occurs on average once perday.

Weekly Occurs once to several timesper week.

Monthly Occurs once to several timesper month.

Other

Chief Complaint –Time of Day

The time of day thechief complainttypically occurs.

Morning The first part or period of theday, extending from dawn, orfrom midnight, to noon.

Midday The middle of the day; noon orthe time centering aroundnoon.

Afternoon The time from noon untilevening; pertaining to the latterpart of the day.

Evening The latter part of the day andearly part of the night; theperiod from sunset to bedtime.

Night The period of darkness betweensunset and sunrise.

Unknown

Chief Complaint – Duration

Chief Complaint –Duration

The length of timethe chief complaintoccurs.

Integer field Number corresponding to theduration.

Units Appropriate time units forreported duration.

Chief Complaint – Severity

Severity The intensity of thechief complaint asperceived by thepatient.

.

Integer 0-10 Verbal 0-10 Scale asappropriate patient’sdevelopmental stage.

Integer 0-5 Wong-Baker FACES Scale: 5-point visual analog scale asappropriate for patient’sdevelopmental stage.

Adapted from Wong DL,Baker CM. Pain inchildren: comparison ofassessment scales.Pediatr Nurs.1988;14:9-17 (33)

Integer 0-10 Infant Behavioral FLACC Scale:0-10-point scale based incaregiver’s observation ofinfant’s behavior.

Adapted fromMerkel SI,Voepel-Lewis T,Shayevitz JR, et al. TheFLACC: a behavioralscale for scoringpostoperative painin young children.Pediatr Nurs.1997;23:293-7 (22)





1040


SuggestedData

ElementPermissible




Chief Complaint – Context

Intercurrent IllnessPresent

Presence of otherillnesses at the timethe chief complaintstarted.

n Yesn Non Unknown

Yes The patient was unwell at thetime the chief complaint wasmanifested.

No The patient was in her/his usualstate of health when the chiefcomplaint was manifested.

Unknown Whether the patient experiencean intercurrent illness at thetime the chief complaintbecame manifest is unknown.

Prior Evaluation In clinical medicine,assessment of thepatient for thepurposes of forminga diagnosis and planof treatment,before the currentchief complaint.

n Yesn Non Unknown

Yes The patient has undergoneprevious subspecialtyevaluation for the same chiefcomplaint.

No The patient has not undergoneprevious subspecialtyevaluation for the same chiefcomplaint.

Unknown It is unknown if the patient hasundergone previoussubspecialty evaluation for thesame chief complaint.

Prior Evaluation:Location

Location of theinstitution wherechief complaint waspreviouslyevaluated.

Text field This term mayfacilitate obtainingold recordsregarding thischief complaint.

Prior Evaluation:Date

Date of assessmentof the patient forthe purposes offorming a diagnosisand plan oftreatment, beforethe current chiefcomplaint.

Date/time Adapted from JonasWB. Mosby’s Dictionaryof Complementary andAlternative Medicine.St. Louis, MO: Mosby/Elsevier; 2005 (17)

Prior Evaluation:Tests Performed

Tests performed aspart of the previousevaluation of chiefcomplaint.

ECG The record produced by thevariations in electrical potentialcaused by electrical activity ofthe heart muscle and detectedat the body surface, as amethod for studying the actionof the heart muscle.

Echocardiogram The recording of the positionand motion of the heart wallsor internal structures of theheart by the echo obtainedfrom beams of the ultrasonicwaves directed through thechest wall.




1041


SuggestedData

ElementPermissible




Exercise stress test A graded test to measure anindividual’s heart rate andoxygen intake while undergoingstrenuous physical exercise, ason a treadmill.

Cardiac MRI A noninvasive medical imagingtechnology using magneticfield and radio waves toevaluate the heart’s anatomyand function for detection andmonitoring of cardiac diseases.

Cardiac CT A noninvasive medical imagingtechnology that uses x-rayprocedure with the aid ofcomputer to generate cross-sectional images of the heart.

Cardiaccatheterization

Passage of a small catheterthrough a vein or artery in anarm or leg or the neck and intothe heart, permitting thesecuring of blood samples,determination of intracardiacpressure, and detection ofcardiac anomalies.

EP study/EP test An invasive procedure thattests the electrical conductionsystem of the heart to assessthe electrical activity andconduction pathways of theheart.

Thomas KE, ZimetbaumPJ. Electrophysiologystudy: indications andinterpretations. In: YanG-X, Kowey PR, eds.Management of CardiacArrhythmias. 2nd ed.New York, NY: HumanaPress (SpringerScienceþBusinessMedia, LLC); 2011:123-40 (31)

Prior Evaluation:Diagnosis

Diagnosis givenbased on theprevious evaluationof the chiefcomplaint.

Prior Evaluation:PreviousTherapies

Treatmentrecommendationsfrom previousevaluation of thechief complaint.

Medications A drug or substance used totreat a medical condition.

Interventionalcatheterization

The performance of a cardiaccatheterization with the intentof making a modification to thestructures of the heart orsurrounding vessels.

Catheter ablation/radiofrequencyablation/cryoablation

Catheter ablation is an invasiveprocedure used to remove orterminate a faulty electricalpathway from sections of thehearts of those who are proneto developing cardiacarrhythmias such as atrialfibrillation, atrial flutter, SVTand Wolff-Parkinson-Whitesyndrome.

Cardiac surgery The surgical treatment ofdiseases affecting the heart andblood vessels inside the thorax.





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SuggestedData

ElementPermissible




Dietary: RoutineCaffeine Intake

The quantities ofcaffeine, a centralnervous systemstimulant, found incoffee, tea andother foods andbeverages, taken inand utilized by thebody.

n Yesn Non Unknown

Yes Intake of caffeine routinelyoccurring as frequently as atleast every other day.

No No routine caffeine, orinfrequent caffeine, intake.

Unknown

Dietary: CaloricIntake

Caloric intake basedon age, BSA andcomorbidconditions.

n Adequaten Inadequaten Excessiven Unknown

Adequate caloricintake

Sufficient caloric intake per day.

Inadequate caloricintake

Deficient caloric intake per day.

Excessive caloricintake

Caloric intake is more than whatis required per day.

Unknown

Dietary: Fluid Intake The quantities ofliquid taken in andused by the body.

n Adequaten Inadequaten Unknown

Adequate Qualitative state of beingsufficient for a specific purpose.

Inadequate Qualitative state of not beingsufficient for a specific purpose.

Unknown

Dietary: Salt Intake The quantities ofsodium chloride (orcommon salt) takenin and used by thebody.

n Adequaten Inadequaten Excessiven Unknown

Adequate Qualitative state of beingsufficient for a specific purpose.

Inadequate Qualitative state of not beingsufficient for a specific purpose.

Excessive Qualitative state of being toomuch for a specific purpose

Unknown

History of Trauma Chief complaint iscaused by traumaticevent.

n Yesn Non Unknown

Witnessed Chief complaintwitnessed or seenby bystander.

n Yesn Non Unknown




1043


SuggestedData

ElementPermissible




Chief Complaint – Associated Signs and Symptoms

AssociatedSymptoms

Symptoms andsigns present withthe chief complaint.

n Bowelincontinence

n Bladderincontinence

n Carpal spasmn Chest painn Coughn Cyanosisn Diaphoresisn Dizzinessn Dyspnean Fatigue with

feedingn Faceplantn Headachen Hyperventilationn Lethargyn Loss of

consciousnessn Nausean Numbness/

tinglingn Pallorn Palpitationn Postictal

confusionn Rashn Seizure activityn Sensation of

heat or coldn Sleep

disturbancen Syncopen Tongue biting

None

For chief complaintof syncope, need tobe able to specifyprodromal, duringor followingsyncopal event as amodifier of thisterm.

Bowel incontinence Inability to control the escapeof stool from the rectum.


Bladder incontinence Inability to control the flow ofurine from the bladder.


Carpal spasm A spasmodic contraction of themuscles of the hands,especially the wrists, such asduring alkalosis or tetany.

Chest pain Discomfort felt in the upperabdomen, thorax, neck, orshoulders.

Cough A sudden, often repetitive,spasmodic contraction of thethoracic cavity, resulting inviolent release of air from thelungs, and usually accompaniedby a distinctive sound.


Cyanosis A bluish or purplishdiscoloration of the skin andmucous membranes resultingfrom a reduced amount ofoxygenated hemoglobin in theblood.


Diaphoresis Indicator to signify thepresence of the symptom ofexcessive sweating.


Dizziness A sensation of lightheadedness,unsteadiness, turning, spinning,or rocking.






1044


SuggestedData

ElementPermissible




Dyspnea An uncomfortable sensation ofdifficulty breathing. It maypresent as an acute or chronicsign of an underlyingrespiratory or heart disorder.


Fatigue with feeding A state of increased discomfortand decreased efficiency due toprolonged or excessive exertionduring the taking of food.

Faceplant A type of syncope in whichthere is no attempt to protectoneself from the effects of thefall.

Headache Pain in various parts of thehead, not confined to the areaof distribution of any nerve.


Hyperventilation Abnormally prolonged, rapid,and deep breathing.


Lethargy Experience of decreasedconsciousness characterized bymental and physical inertness.


Loss of consciousness A level of awareness that canbe described as consistently notresponsive to stimuli.


Nausea The sensation that one is aboutto vomit.


Numbness/tingling (1) The loss of the sensation offeeling in an area of the body.AND/OR (2) A sensation as ofrepetitive pin pricks, caused bycold or by striking a nerve, orbecause of various diseases ofthe central or peripheralnervous system.

NCI Thesaurus (10) NCI ThesaurusCode(s): (1):C34857; (2):C50771

Pallor An unusual or extremepaleness, state of decreasedskin coloration.

Palpitations An unpleasant sensation ofirregular and/or forcefulbeating of the heart.


Pedal spasm A spasmodic contraction of themuscles of the feet, especiallythe ankles, such as duringalkalosis or tetany.

Postictal confusion Period of confusion post seizurein which the patient does notrespond appropriately althoughappearing “awake”.

Rash Any change in the skin whichaffects its appearance ortexture. A rash may be localizedto one part of the body, oraffect all the skin. Rashes maycause the skin to change color,itch, become warm, bumpy,dry, cracked, or blistered, swelland may be painful.


Seizure Sudden, involuntary skeletalmuscular contractions ofcerebral or brain stem origin.


Sensation of cold An internal feeling of beingcooler without a concomitantchange in the ambientenvironment.




1045


SuggestedData

ElementPermissible




Sensation of heat An internal feeling of beingwarmer without a concomitantchange in the ambientenvironment.

Sleep disturbance An interruption, departure, ordivergence from that which isconsidered normal in sleep.

Syncope Sudden loss of consciousnesswith loss of postural tone, notrelated to anesthesia withspontaneous recovery asreported by patient orobserver. Patient mayexperience syncope whensupine.

ACC/AHA/HRS 2006Key Data Elements andDefinitions forElectrophysiologicalStudies and Procedures(12)

Tongue-biting Clamping of the teeth on thetongue, as can accompany aseizure.

None No associated symptoms/signspresent.

Chief Complaint – Modifying Factors

Exacerbating Factors Factors causing thechief complaintto worsen.

n Caffeine intaken Change to up-

right positionn Crying/emotionn Defecationn Exercisen Hair brushingn Hot weathern Hot bathn Inspirationn Intercurrent

illnessn Leaning forwardn Mensesn Micturitionn Movementn Noxious stimulin Painn Palpitationn Prolonged

standingn Startlen Stretchingn Supine positionn Swimmingn Othern None

Caffeine intake Intake of caffeine routinelyoccurring as frequently as atleast every other day.

Change to uprightposition

The state of gong from a supineor seated position to a standingposition.

Increased emotionalstate

A state of mental excitement,characterized by alteration offeeling tone and byphysiological and behavioralchanges.

Defecation The evacuation of fecal matterfrom the rectum.

Exercise Performance of physicalexertion for improvement ofhealth or correction of physicaldeformity.

Hair brushing The use of an implement,consisting of bristles, attachedto a handle to groom hair.





1046


SuggestedData

ElementPermissible




Hot weather Increased ambienttemperature.

Hot bath/shower Bathing with water that has anextremely elevatedtemperature.

Inspiration The drawing of air into thelungs.

Intercurrent illness A disease occurring during thecourse of another disease withwhich it has no connection.

Leaning forward Tilting the upper body so thatthe head and chest extendsbeyond the waist.

Menses The monthly flow of bloodfrom the female genital tract.

Micturition Urination, the act of emptyingthe bladder of urine.

Movement An act of moving; motion.

Noxious stimulus Hurtful, injurious, perniciousagent that produces a reactionin a receptor or tissue.

Pain A feeling of distress, suffering,or agony, caused by stimulationof specialized nerve endings.

Palpation The act of feeling with thehand.

Prolonged standing The state of being in an uprightposition continuing for a timegreater than what would beconsidered normal.

Startle To make a quick involuntarymovement as in alarm, surprise,or fright.

Stretching An activity that elongatesshortened soft-tissuestructures and therebyincreases flexibility.

Supine position Lying with the face upward oron the dorsal surface.

Swimming Propel the body through thewater by using the limbs.

Other

None

Alleviating Factors Factors making thechief complaintbetter.

n Antacidmedications

n Inspirationn Isometric

countermeasuresn Leaning forwardn NSAID

medicationsn Pressuren Restn Supine positionn None

Antacid medication Oral therapeutic agent thatcounteracts acidity.

Inspiration The drawing of air into thelungs.




1047


SuggestedData

ElementPermissible




Isometriccountermeasures

Grasping one’s hands in themidline and pushing them awayfrom each other with tensedmuscles OR leg crossing plustensing of leg, abdominal, andbuttock muscles.

Adapted from BrignoleM, Croci F, Menozzi C,et al. Isometric armcounter-pressuremaneuvers to abortimpending vasovagalsyncope. J Am CollCardiol. 2002;40:2053-9 (11) AND fromKrediet CTP, van Dijk N,Linzer M, et al.Management ofvasovagal syncope:controlling or abortingfaints by leg crossingand muscle tensing.Circulation. 2002;106:1684-9 (19)

Leaning forward Tilting the upper body so thatthe head and chest extendsforward of the waist.

NSAID medications A medication from the categoryof the NSAIDs.

Pressure Continuous physical forceexerted on an object bysomething in contact with it.

Rest Repose after exertion.

Supine position Lying with the face upward oron the dorsal surface.

None

Chief Complaint – Other Data Qualifiers

Location of ChestPain

The location ofchest pain.

n Sternumn Sternal bordern Midclavicular

linen Intercostal spacen Epigastriumn Anterior axillary

line

Sternum(lower, mid, upper)

Location is in the middle of theanterior wall of the thorax,bounded by the clavicles,above, and with the cartilagesof the first seven ribs, along thesides.

Sternal border(left lower/mid/upper; right lower/mid/upper)

Location is along the lateraledge of the sternum.

Midclavicular line(right/left)

Location is along an imaginaryvertical line on the chestoriginating from the midpointof a clavicle.

Intercostal space(right/left, 2/3/4/5)

Location is in the area definedby a superior rib margin and aninferior rib margin.

Epigastrium The upper and middle region ofthe abdomen, located withinthe sternal angle.

Anterior axillary line(right/left)

Location is along an imaginaryvertical line that descendsalong the lateral aspect of thechest wall originating from thearmpit.





1048


SuggestedData

ElementPermissible




Radiation ofChest Pain

The part of thebody to where thechest pain radiates.

n Nonen Left armn Neckn Backn Abdomenn Sternumn Sternal bordern Midclavicular

linen Anterior axillary

linen Other

None The chest pain does not radiate.

Left arm The chest pain radiates to theleft arm.

Neck The chest pain radiates to theneck.

Back The chest pain radiates to theback.

Abdomen The chest pain radiates to theabdomen.

Sternum(lower, mid, upper)

Location is in the middle of theanterior wall of the thorax,bounded by the clavicles,above, and with the cartilagesof the first seven ribs, along thesides.

Sternal border(left lower/mid/upper; right lower/mid/upper)

Location is along the lateraledge of the sternum.

Midclavicular line(right/left)

Location is along an imaginaryvertical line on the chestoriginating from the midpointof a clavicle.

Anterior axillary line(right/left)

Location is along an imaginaryvertical line that descendsalong the lateral aspect of thechest wall originating from thearmpit.

Other The chest pain radiates to anarea not specified.

Quality of Chest Pain The characteristicsof chest pain asdescribed by thepatient.

n Sharp painn Dull painn Burning painn Tearing painn Pressure pain

Sharp pain A sensation of a stabbingfeeling.

Dull pain A sensation of mild or blunteddiscomfort.

Burning pain A sensation of an intensediscomfort, similar to thatexperience as a result of athermal burn, distinct fromsharp, stabbing or aching, oftenrelated to nerves, used,sometimes to describe gastricor esophageal pain.

Tearing pain A sensation of a sharp,lacerating, intense, discomfort,sometimes used to describe thepain felt during an aorticdissection.

Pressure pain A sensation of an objectcreating physical force.




1049


SuggestedData

ElementPermissible




Quality ofPalpitations

The characteristicsof the palpitationsas described by thepatient.

n Skipped/earlyheartbeats

n Forcefulheartbeats

n Racingheartbeats

Skipped/earlyheartbeats

The sensation of an isolatedcardiac contraction occurringprior to the normal or regularrhythm.

Forceful heartbeats The sensation of an isolatedcardiac contraction occurringwith greater strength than thatof a typical or normalcontraction.

Racing heartbeats The sensation of an abnormallyrapid heart rate.

Activity AssociatedWith ChiefComplaint

Associated activitywhen chiefcomplaint occurs orthat induces onsetof the chiefcomplaint.

n At restn During exercisen After exercisen No pattern

At rest Chief complaint typically occursat rest.

During exercise Chief complaint typically occursduring exercise.

After Exercise Chief complaint typically occurson conclusion of exercise.

No pattern Chief complaint occurs both atrest and with exercise.

CT indicates computed tomography; ECG, electrocardiogram; EP, electrophysiology; MRI, magnetic resonance imaging; NCI, National Cancer Institute; and SVT, supraventriculartachycardia.




1050

APPENDIX 4. RISK FACTORS


SuggestedData Element

PermissibleValue

Permissible ValueDefinition

ParentField


History of CHD

History of CHD Any abnormality ofcardiac structure orfunction present at birth.

n Yesn Non Unknown

Yes

No

Unknown

Age Diagnosed The age of the patientwhen CHD wasdiagnosed.

Age In days, weeks, months,or years.




PermissibleValue


ParentField


Presenting Finding The presenting findingsof CHD.

Murmur An auscultated findingdescribing a series ofaudible vibrations ofvarying intensity(loudness), frequency(pitch), quality,configuration, andduration created byturbulent blood flow inthe heart or surroundingvessels.

Cyanosis A bluish or purplishdiscoloration of the skinand mucous membranesresulting from a reducedamount of oxygenatedhemoglobin in the blood.


Respiratory distress A pathological increase inthe effort and frequencyof breathing movements.


Fatigue A state of exhaustionusually caused by variousetiologies such as aperiod of mental orbodily activity, sleepdeprivation, medications,chronic disease, or otherfactors.


Failure to thrive Weight below the third tofifth percentile or adecrease in the percentilerank of two major growthparameters in a shortperiod.

Multiple anomalies Presence of multiplecongenitalmalformations.

Family history ofCHD

Having a first-degree orfirst- and second-degreerelative with a history ofCHD.

Other

Intervention(s) The treatment the patienthad for CHD.

n Medicationsn Infective endo-

carditisprophylaxis

n Cardiaccatheterization

n Interventionalcatheterization

n Surgery

Medications A drug or substance usedto treat a medicalcondition.

IE prophylaxis The giving of antibiotictherapy for theprevention ofendocarditis.




1051



PermissibleValue


ParentField


Cardiaccatheterization

Passage of a smallcatheter through a vein inan arm or leg or the neckand into the heart,permitting the securing ofblood samples,determination ofintracardiac pressure, anddetection of cardiacanomalies.


The performance of acardiac catheterizationwith the intent of makinga modification to thestructures of the heart orsurrounding vessels.

Cardiac surgery The surgical treatment ofdiseases affecting theheart and blood vesselsinside the thorax.

Myopathy A nontraumatic andnonneoplastic disease ofthe muscles.

n Duchennen Beckern Non Unknown


Duchenne An X-linked geneticdisorder caused by amutation in thedystrophin genecharacterized by earlyonset, rapidly progressiveskeletal muscle weaknessand atrophy initiallyinvolving the lowerextremities thateventually affect theentire body includingrespiratory and cardiacmuscles.


Becker An X-linked geneticdisorder caused by amutation in thedystrophin genecharacterized by onset inlate childhood or adultsof slowly progressiveskeletal muscle weaknessand atrophy initiallyinvolving the lowerextremities that mayeventually affects theentire body includingrespiratory and cardiacmuscles.


No

Unknown





1052




PermissibleValue


ParentField


Other MuscularDystrophies andStorage DiseasesThat Lead toCardiomyopathies

n Limb girdledystrophy

n Myotonicdystrophy

n Mitochondrialn Ox/Phosn Glycogen stor-

age disordern Fatty acid

oxidationdisorder

n Nonen Unknown

Limb girdledystrophy

A group of musculardystrophies due tomutations in a variety ofgenes, predominantlyaffecting the proximalmuscles of the arms andlegs.

Myotonic dystrophy An inherited progressivedisorder affecting themuscles.

Mitochondrial Muscular dystrophysecondary to amitochondrial disorder.

Ox/Phos Muscular dystrophysecondary to a geneticdefect that interfereswith oxidativephosphorylationfrequently associatedwith severe neurologicabnormalities.

Glycogen storagedisorder

Myopathy secondary toglycogen accumulationrelated to an enzymaticdeficiency or absence.

Fatty acid oxidationdisorder

Myopathy secondary to agenetic defect in fattyacid metabolism.

None

Unknown

Kawasaki’s Disease

Kawasaki Disease Kawasaki disease is anacute self-limitedvasculitis of childhoodthat is characterizedby fever, bilateralnonexudativeconjunctivitis, erythema ofthe lips and oral mucosa,changes in the extremities,rash, and cervicallymphadenopathy.

McCrindle BW,Rowley AH,Newburger JW, et al.Diagnosis,treatment, andlong-termmanagement ofKawasaki disease: ascientific statementfor healthprofessionals fromthe American HeartAssociation.Circulation.2017;135:e927-99(21)

Yes

No

Unknown



1053



PermissibleValue


ParentField


Symptom Onset Date of the first onsetof the symptoms ofKawasaki disease.

Date mm-dd-yyyy

Age When FirstNoted

The age of the patientwhen the symptoms ofKawasaki disease werefirst noted.

Integer Age in days, weeks,months, or years.

Symptoms The symptoms ofKawasaki disease thatthe patient had.

Fever The elevation of thebody’s temperatureabove the upper limit ofnormal, usually taken as37.7�C.


Rash Any change in the skinwhich affects itsappearance or texture.The rash in Kawasakidisease can bepolymorphous andtypically includes thegroin.


Conjunctivitis Inflammation of theconjunctivae of the eye.The conjunctivitis ofKawasaki disease isnonexudative and sparesthe limbus.


Cheilitis An inflammatory processaffecting the lips.


Strawberry tongue The pathological findingof the tongue in whichthe tongue has anappearance of astrawberry.

Lymphadenopathy A clinical findingindicating that a lymphnode is enlarged. Thelymphadenopathy ofKawasaki disease is asingle anterior cervicallymph node.

NCI Thesaurus (10) Specifically, thereis an anteriorcervical lymphnode withKawasaki disease.If there are shottyor multiple nodesinvolved, it istypically felt tonotbe consistent withKawasaki disease.NCI ThesaurusCode: C50764

Arthralgia Pain in a joint. NCI Thesaurus (10) NCI ThesaurusCode: C50464

Erythema of thepalms and/or soles

Red discoloration of theskin caused by infectiousagents, drughypersensitivity, orunderlying diseases.


Edema of the palmsand/or soles

Accumulation of anexcessive amount ofwatery fluid in cells orintercellular tissues.






1054



PermissibleValue


ParentField


Desquamation Peeling of the skin thattypically starts at the tipsof the fingers/toes.

Labile affect Emotional instabilitycharacterized by rapidand dramatic moodswings.

Abdominal pain The sensation ofdiscomfort in theabdominal region.


Dehydration A condition resultingfrom the excessive loss ofwater from the body.


Gallbladder hydrops Enlargement of thegallbladder secondary toprolonged obstruction ofthe cystic duct that isnon-obstructive.

Kawasaki Z-ScoreClassification

Classification for the sizeof aneurysm in Kawasakidisease.

n No involvementn Dilatation onlyn Small aneurysmn Medium

aneurysmn Large or giant

aneurysm

McCrindle BW,Rowley AH,Newburger JW, et al.Diagnosis,treatment, andlong-termmanagement ofKawasaki disease: ascientific statementfor healthprofessionals fromthe American HeartAssociation.Circulation.2017;135:e927-99(21)

No involvement Always <2 mm

Dilatation only From 2 to 2.5 mm; or ifinitially <2, a decreasein Z score duringfollow-up $1

Small aneurysm $2.5 to <5 mm

Medium aneurysm $5 to <10 mm

Large or giantaneurysm

$10, or absolutedimension $8 mm

Laboratory Findingsfor KawasakiDisease

The laboratory findingsindicating diagnosis ofKawasaki disease.

The criteria for incompleteKawasaki disease are:1) Elevated ESR or CRP2) Sterile pyuria3) Anemia4) Decreased albumin5) Elevated

alanineaminotransferase

6) Leukocytosis7) Thrombocytosis

Platelet count The determination of thenumber of platelets in ablood sample, usuallyexpressed as platelets permilliliter of whole blood.





1055



PermissibleValue


ParentField


ESR A quantitativemeasurement of thedistance that red bloodcells travel in 1 hour in asample of unclottedblood.


CRP A quantitativemeasurement of theamount of CRP, aninflammatory marker, inthe blood, expressed asmilligrams per liter.

Sterile pyuria The presence ofleukocytes in the urinewithout evidence of aninfection.

WBC Concentration ofleukocytes in theperipheral blood stream,expressed as WBCs permilliliter of whole blood.

Hemoglobin Concentration ofhemoglobin in theperipheral blood stream,expressed as grams perdeciliter.

Alanineaminotransferase

The concentration ofalanine aminotransferase,a liver enzyme, in theblood, expressed in unitsper liter.


Intervention forKawasaki Disease

Whether treatment wasgiven for Kawasakidisease.

Yes

No

Intervention forKawasaki Disease,Timing

The timing of treatmentgiven to patient from theonset of the initialsymptoms of Kawasakidisease.

<10 days within theonset of initialsymptoms

>10 days within theonset of initialsymptoms

Intervention forKawasaki Disease,Medication(s)

The medications given tothe patient for treatmentof Kawasaki disease. Ifknown, dosage shouldalso be indicated.

IVIG Pooled immunoglobulinsgiven parenterally. InKawasaki disease, givenas 2 g/kg of body weight.

Aspirin Acetyl salicylic acid givenorally as 80-100 mg/kgbody weight per day,divided QID through thefirst 36 hours of IVIGtherapy, then 3-5 mg/kgbody weight daily until 6to 8 weeks after theonset of Kawasakidisease.





1056



PermissibleValue


ParentField


Coumadin An anticoagulant used toprevent thrombosis andthromboembolism thatinhibits vitamin K epoxidereductase.

Other Includes ticlopidine,clopidogrel, abciximab,steroids, infliximab.

Intervention forKawasaki Disease,Response

The patient’s response totreatment of Kawasakidisease.

n Yesn No

Intervention forKawasaki Disease,Type of Response

The type of treatmentpatient received forKawasaki disease.

n Resolution offindings

n Relapsen Retreatment

Resolution offindings

Relapse

Retreatment

Intervention forKawasaki Disease,Medications

Medications used for thetreatment of Kawasakidisease.

n IVIGn Steroidsn Infliximabn Other

IVIG

Steroids

Infliximab

Other

Intervention forKawasaki Disease,Sequelae

Outcomes or findingsafter treatment ofKawasaki disease.

n Nonen Relapsen Coronary artery

aneurysmn Coronary artery

ectasian Anginan MIn Gangrene

None

Relapse The return of a diseaseafter a period ofremission.


Coronary arteryaneurysm

Focal dilation of acoronary artery secondaryto arterial wallweakening.

Coronary arteryectasia

Diffuse dilation ofcoronary artery segment.

Angina A heart condition markedby paroxysms of chestpain due to reducedoxygen to the heart.


MI Gross necrosis of themyocardium, as a resultof interruption of theblood supply to the area,as in coronarythrombosis.

2014 ACC/AHA KeyData Elements andDefinitions forCardiovascularEndpoint Events inClinical Trials (16)

NCI ThesaurusCode: C27996

Gangrene Death of tissue, usually inconsiderable mass andgenerally associated withloss of vascular (nutritive)supply and followed bybacterial invasion andputrefaction.





1057



PermissibleValue


ParentField


Rheumatic Fever

Rheumatic Fever An inflammatory disorderthat follows infectionwith group Astreptococcus. It affectsthe heart, joints, andsubcutaneous tissues.It is manifested withpericarditis, heartmurmur, congestive heartfailure, polyarthritis,subcutaneous nodules,and erythemamarginatum.

n Yesn Non Unknown


Onset Date of the first onset ofrheumatic fever.

Date mm-dd-yyyy

Age When FirstSymptomsOccurred

The age of the patientwhen first symptoms ofrheumatic fever occurred.

Integer Age in years

Symptoms The symptoms ofrheumatic fever that thepatient had.

Carditis Inflammation of the heartor its surroundings.

Polyarthritis Type of arthritis thatinvolves $5 jointssimultaneously, andusually associated withautoimmune conditions.

Subcutaneousnodules

Firm lump under the skin.

Rash Any change in the skinthat affects itsappearance or texture.The rash associated withrheumatic fever iserythema marginatum, apruritic rash characterizedby pink rings on the trunkand inner surfaces of theextremities.


Sydenham’s chorea A neurologic disordercharacterized by smoothinvoluntary,uncoordinatedmovements affectingespecially the hands, feet,and face.

Evidence of previousstreptococcusinfection

The presence of a positiveanti-Streptolysin-O oranti-DNase B,demonstrating that thepatient was previouslyinfected withStreptococcus.

Previous acuterheumatic fever orrheumatic heartdisease

Prior history of rheumaticfever or rheumatic heartdisease.


Family history ofrheumatic fever/rheumatic heartdisease

The presence of a first-degree family memberwith a history ofrheumatic fever orrheumatic heart disease.





1058



PermissibleValue


ParentField


Minor Criteria forRheumatic Fever

Minor symptom criteriafor rheumatic diseaseinclude fever, arthralgia,elevated ESR levels,elevated CRP levels,elevated WBC levels,prolonged PR interval.

n Yesn No

Intervention forRheumatic Fever

The type of treatment thepatient received forrheumatic fever.

n Bed restn Medicationn Interventional

catheterizationn Cardiac surgery

Bed rest Restriction of a patient’sactivity, either partially orcompletely.

Medication A drug product thatcontains one or moreactive and/or inactiveingredients; it is intendedto treat, prevent oralleviate the symptoms ofdisease. This term doesnot refer to the individualingredients that make upthe product.


The performance of acardiac catheterizationwith the intent of makinga modification to thestructures of the heart orsurrounding vessels.

Cardiac surgery The surgical treatment ofdisease affecting theheart and blood vesselswithin the thorax.

Medication for Rheumatic Fever PharmacologicalTherapy for

Rheumatic Fever

n Aspirinn Steroidsn Anticongestive

medicationsn Penicillinn Other

Use RxNorm codemapping fordefinition ofmedications

Surgery for Rheumatic Fever SurgicalIntervention forRheumatic Fever

n Valvuloplastyn Valve replacement

Other Risk Factors

Family History ofHeart Disease

The presence of heartdisease in a first-degreefamily member.

n Cardiomyopathyn Coronary artery

diseasen CHDn Long QTcn Marfan

Syndromen Ehlers-Danlos

syndromen Sudden death/

SIDSn SADSn Others

Cardiomyopathy A disease of the heartmuscle or myocardiumproper.





1059



PermissibleValue


ParentField


CAD Indicate if the patienthas/had any directblood relatives (i.e.,parents, siblings,children) who havehad any of thefollowing diagnosedat age <55 y for malerelatives or <65 y forfemale relatives:

n Coronary artery dis-ease (i.e., angina,previous CABG orPCI)

n MIn Sudden cardiac death

without obviouscause.

If the patient is adoptedor the family history isunavailable, code “No.”Yes/No/Null.

STS Registry v2.70(29)

CHD The presence of a heartdefect that is present atbirth.


Long QTc Disorder characterized byprolongation of the heartrate corrected QT intervalthat predisposes toventricular arrhythmiasand sudden death. Ascalculated by the Bazettformula.

Marfan syndrome A genetic syndromeinherited as an autosomaldominant trait. It iscaused by mutations inthe FBN1 gene. It ischaracterized by tallstature, elongatedextremities, mitral valveprolapse, aorticdilatation, aorticdissection, andsubluxation of the lens.Diagnosis is made basedon the 2010 RevisedGhent Nosology forMarfan syndrome (41).


Ehlers-Danlossyndrome

A group of inheritedconnective tissuedisorders characterizedby loose and fragile skinand joint hypermobility.

Adapted from NCIThesaurus (10)


Sudden death/SIDS Unexpected death ininfancy which remainsunexplained followingautopsy, review of themedical history, andinvestigation of the deathcircumstances and deathscene.






1060



PermissibleValue


ParentField


SADS Unexpected suddencardiac death secondaryto a genetic conditionthat lowers the thresholdfor lethal arrhythmia. Thisincludes Brugadasyndrome,catecholaminergicpolymorphic ventriculartachycardia, long QTsyndrome, short QTsyndrome, Timothysyndrome, and Wolff-Parkinson-Whitesyndrome.

Others

Abnormal CardiacStudy

History of abnormalcardiac study.

n ECGn Echocardiogramn Chest x-rayn Holter monitorn Event monitorn Other

ECG A procedure that recordsthe electrical current inthe heart in the form of acontinuous strip graph.


Echocardiogram A test that uses high-frequency sound waves(ultrasound) to create animage of the heart.


Chest x-ray A radiographicexamination of the chest.


Holter monitor An ambulatoryelectrocardiographictechnique that records acontinuouselectrocardiographicrhythm pattern for $24 hto detect heartarrhythmias.


Event monitor An ambulatoryelectrocardiographytechnique thatintermittently records theelectrical rhythm of theheart on demand orautomatically

Other

PulmonaryHypertension

Increased pressure withinthe pulmonary circulationdue to lung or heartdisorder.

n Primarypulmonaryhypertension

n Secondarypulmonaryhypertension


Primary pulmonaryhypertension

Type of pulmonaryhypertension that is notcaused by any otherdisease or condition.

Secondarypulmonaryhypertension

Type of pulmonaryhypertension that iscaused by an underlyingcondition.

Failure to GainWeight/Thrive

History of failure to gainweight.

n Yesn No

CABG indicates coronary artery bypass graft; CAD, coronary artery disease; CHD, congenital heart disease; CRP, C-reactive protein; ESR, erythrocyte sedimentation rate; IE, infectiveendocarditis; IVIG, intravenous immunoglobulin; MI, myocardial infarction; NCI, National Cancer Institute; PCI, percutaneous coronary intervention; SADS, sudden arrhythmia deathsyndrome; SIDS, sudden infant death syndrome; and WBC, white blood cell.



1061



1062

APPENDIX 5. PAST MEDICAL HISTORY

Data Element Definition

SuggestedData

ElementPermissible

ValuePermissible Value

DefinitionParentField


Birth

Gestation The period of fetaldevelopment in theuterus from the start ofconception until its birth.

n Termn Pretermn Postterm

NCI Thesaurus(10)


Term Gestation is $37 wk usingbest estimated due date.

Preterm Gestation that is <37 wkand 0 days’ gestational age.

Postterm Gestation lasts $42 wk.

GestationalComplications

A difficulty or problemthat occurs duringintrauterine developmentthat can jeopardize thehealth of the fetus.

n Yesn Non Unknown

Neonatal Complications A problem that occurs ator just after delivery of aninfant that can jeopardizethe health of the infant.

n Yesn Non Unknown

Review of Systems

Review of Systems

Dermatological Normal or abnormal clinicalfindings related to the skin.

Endocrine Normal or abnormal clinicalfindings related to thecollection of tissues capableof secreting hormones.

NCI Thesaurus(10)


Gastrointestinal Normal or abnormalfindings related to thestomach and intestines.

NCI Thesaurus(10)


Hematological Normal or abnormalfindings related toabnormalities of thesynthesis of hemoglobin,and/or the mechanisms ofcoagulation.

NCI Thesaurus(10)

NCI ThesaurusCode(s):(1): C26323;(2): C17837

Hemoglobinopathy Normal or abnormalfindings related to thestructural alterations of aglobin chain within thehemoglobin molecule.

NCI Thesaurus(10)


Musculoskeletal Normal or abnormalfindings related to themusculoskeletal system.

Neurologic Normal or abnormalfindings related to thenervous system.

Developmental Normal or abnormalfindings related to physical,emotional, behavioral, orsocial development.

Otolaryngological Normal or abnormalfindings related to disordersof the ear, nose, and throat.

NCI Thesaurus(10)


Psychiatric Normal or abnormalfindings related to mentalhealth.

NCI Thesaurus(10)




SuggestedData

ElementPermissible




Respiratory Normal or abnormalfindings related to therespiratory system.

NCI Thesaurus(10)


Rheumatological Normal or abnormalfindings related to diseasesand disorders of theconnective tissues.

NCI Thesaurus(10)


Syndrome

Syndrome Genetic anomaliesand collections ofmalformations that areknown to cluster togetherthat can be associatedwith congenital heartdefects.

Trisomy-13 A chromosomal abnormalityconsisting of the presenceof part or all of a third copyof chromosome 13 insomatic cells.

Adapted fromNCI Thesaurus(10)


Trisomy-18 A chromosomal abnormalityconsisting of the presenceof part of all of a third copyof chromosome 18 insomatic cells.



Trisomy-21 A chromosomal abnormalityconsisting of the presenceof part or all of a third copyof chromosome 21 insomatic cells.



Turner syndrome A chromosomal abnormalityoccurring in phenotypicfemales, characterized bythe absence of a part or allof one of the sexchromosomes.

NCI Thesaurus(10)


Loeys-Dietz syndrome A genetic syndromecharacterized by a rareautosomal dominantsyndrome caused bymutations in the TGFBR1 orTGFBR2 genes. It ischaracterized by aorticdilation and dissection,vascular tortuosity,hypertelorism, bifid uvula,scoliosis, and pectusdeformities.

Loeys BL, DietzHC, BravermanAC, et al. Therevised Ghentnosology for theMarfan syndrome.J Med Genet.2010;47:476-85(37)

Noonan syndrome A genetic syndrome causedby mutations in the PTPN11gene (>50% of the cases)or less frequently mutationsin the SOS1, RAF1, or KRASgenes. It is characterized byshort stature, webbed neck,hypertelorism, low-set ears,deafness, andthrombocytopenia orabnormal platelet function.

NCI Thesaurus(10)





1063


SuggestedData

ElementPermissible




Williams syndrome A genetic syndrome causedby multiple gene deletionsfrom a region ofchromosome 7, includingthe deletion of CLIP2, ELN,GTF2I, GTF2IRD1, and LIMK1genes. It is characterized bydistinctive facial appearance(elfin facies), mild-to-moderate mentaldevelopmental delay,cheerfulness, cardiovascularabnormalities and infantilehypercalcemia.

NCI Thesaurus(10)


22q11 deletion (DiGeorgesyndrome, Shprintzensyndrome, FACES,CATCH-22)

A congenital anomalycharacterized by partialdeletion of the short arm ofchromosome 22.

NCI Thesaurus(10)


Marfan syndrome A genetic syndromeinherited as an autosomaldominant trait. It is causedby mutations in the FBN1gene. It is characterized bytall stature, elongatedextremities, mitral valveprolapse, aortic dilatation,aortic dissection, andsubluxation of the lens.Diagnosis is made based onthe 2010 Revised GhentNosology for Marfansyndrome (41).

VACTERL association An association of congenitalbirth defects that includesvertebral abnormalities,anal atresia, cardiacabnormalities, tracheo-esophageal fistula, renalabnormalities, and limbabnormalities.

NCI Thesaurus(10)


CHARGE association A genetic syndromecharacterized by autosomaldominant mutations in theCHD7 gene. The termCHARGE is an acronym forthe following unusualcongenital abnormalitiesthat are associated with thissyndrome: coloboma of theeye, heart defects, choanalatresia, growth anddevelopmental delay,genital, and earabnormalities.



Fetal alcohol syndrome A syndrome that candevelop in infants whosemothers consumed alcoholduring pregnancy.Manifestations of thissyndrome include low birthweight, failure to thrive,developmental defects,organ dysfunction, mentaldeficiencies, behavioralproblems, and poor motorcoordination.

NCI Thesaurus(10)






1064


SuggestedData

ElementPermissible




Ehlers-Danlos syndrome A group of inheritedconnective tissue disorderscharacterized by loose andfragile skin and jointhypermobility.



Osteogenesis imperfecta A group of usuallyautosomal dominantinherited disorderscharacterized by defectivesynthesis of collagen type Iresulting in defectivecollagen formation. It ischaracterized by brittle andeasily fractured bones.

NCI Thesaurus(10)


Glycogen storage disease An inherited metabolicdisorder characterizedeither by defects inglycogen synthesis ordefects in the breakingdown of glycogen. It resultseither in the creation ofabnormal forms of glycogenor accumulation ofglycogen in the tissues.

NCI Thesaurus(10)


Mucopolysaccharidosis A group of autosomalrecessive or X-linkedinherited lysosomal storagedisorders affecting themetabolism ofmucopolysaccharides,resulting in theaccumulation ofmucopolysaccharides in thebody. Signs and symptomsinclude organomegaly,mental developmentaldelay, abnormal skeletaldevelopment, heartdisorders, hearing loss, andcentral nervous systemdeficiencies.

NCI Thesaurus(10)


Tuberous sclerosis Hereditary diseasecharacterized by seizures,intracerebral tumors,cardiac tumors,developmental delay, andskin and ocular lesions.

Other

Unknown




1065


SuggestedData

ElementPermissible




Noncardiac SurgicalHistory

Surgeries or interventionsperformed in the patientthat do not involve theheart, but are commonlyseen in patients who havecomplex congenital heartdisease.

n Non Unknownn Tonsillectomyn Adenoidectomyn Bilateral myringoto-

mies with tubeplacement

n Herniorrhaphyn Cleft palate repairn Dental extractionn Spinal fusionn Gastrostomy/

fundoplicationn Fundoplicationn Central venous

cathetern Ventriculoperitoneal

shuntn Ladd’s or other mal-

rotation proceduresn Other

No

Unknown

Tonsillectomy Surgical removal of thetonsils.

NCI Thesaurus(10)


Adenoidectomy Surgical removal of thepharyngeal tonsils(adenoids).

NCI Thesaurus(10)


Bilateral myringotomieswith tube placement

Also known as placement ofpressure equalization tubes,used for treatment ofchronic or recurrent otitismedia.

Herniorrhaphy Surgical repair of a hernia(e.g., inguinal, abdominal).

Cleft palate repair Surgery to repair a cleftpalate.

Dental extraction Removal of $1 teeth.

Spinal fusion Surgical procedure inwhich $1 parts of the spineare joined together.

Gastrostomy/fundoplication

Creation of an openingbetween the stomach andthe outside of the body.

NCI Thesaurus(10)


Fundoplication A therapeutic surgicalprocedure to treatgastroesophageal refluxdisease and hiatus hernia. Itinvolves the wrapping ofthe fundus of the stomacharound the lower esophagusto strengthen the loweresophageal sphincter.

NCI Thesaurus(10)


Central venous catheter A tube surgically placed intoa blood vessel for thepurpose of givingintravenous fluid and drugsor for obtaining bloodsamples.

NCI Thesaurus(10)


Ventriculoperitonealshunt

Surgical procedure in whicha tube is placed in one ofthe ventricles of the brainand whose other end isplaced in the abdomen torelieve hydrocephalus





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Ladd’s or othermalrotation procedures

Surgical procedureperformed to alleviateintestinal malrotation.

Other

Medications A drug or substance usedto treat a medicalcondition.The following informationfor medications should becollected: Name, dose,frequency, route, andconcentration.

n Yesn Non Unknown

Allergic Reaction A hypersensitivityreaction triggered byexposure to a previouslyencountered foreignsubstance to which theindividual has formedantibodies.

n Medicationn Fishn Othersn Nonen Unknown

NICHD (41)

Family History ofCardiovascularDisease andCardiovascularDisease Risk Factors

n CHDn CADn CABGn PCIn MIn Hypertensionn Hyperlipidemian Sudden cardiac deathn Stroken Arrhythmian Syncopen Other chronic

diseasesn Unknown

CHD The presence of a heartdefect that is present atbirth.

NCI Thesaurus(10)


CAD Narrowing of the coronaryarteries due to fattydeposits inside the arterialwalls. The diagnosticcriteria may includedocumented history of anyof the following:documented coronaryartery stenosis $50% (bycardiac catheterization orother modality of directimaging of the coronaryarteries); previous coronaryartery bypass graft (CABG),previous percutaneouscoronary intervention (PCI),previous myocardialinfarction.

CABG A procedure performed tobypass partially orcompletely occludedcoronary arteries with veinsand/or arteries harvestedfrom elsewhere in the body,thereby improving theblood supply to thecoronary circulationsupplying the myocardium(heart muscle).

2014 ACC/AHAKey DataElements andDefinitions forCardiovascularEndpoint Eventsin Clinical Trials(16)




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PCI PCI is the placement of anangioplasty guide wire,balloon, or other device(e.g., stent, atherectomy,brachytherapy, orthrombectomy catheter)into a native coronary arteryor CABG for the purpose ofmechanical coronaryrevascularization. Theassessment of coronarylesion severity viaintravascular ultrasound,coronary flow reserve, orfractional flow reserve isnot considered to be a PCIprocedure.


MI Clinical syndrome wherethere is evidence ofmyocardial necrosis in aclinical setting consistentwith myocardial ischemia.


Hypertension Pathological increase inblood pressure; arepeatedly elevated bloodpressure exceeding140/90 mm Hg.

NCI Thesaurus(10)


Hyperlipidemia Elevated levels of lipids inthe blood.

NCI Thesaurus(10)


Sudden cardiac death Death that occursunexpectedly, and notwithin 30 days of anacute MI.


Stroke An acute episode of focal orglobal neurologicaldysfunction caused bypresumed brain, spinal cord,or retinal vascular injury as aresult of hemorrhage orinfarction but withinsufficient information toallow categorization asischemic or hemorrhagic.

Kernan WN,Ovbiagele B, BlackHR, et al.Guidelines for theprevention ofstroke in patientswith stroke andtransient ischemicattack: a guidelinefor healthcareprofessionalsfrom the AmericanHeart Association/American StrokeAssociation.Stroke. 2014;45:2160-236 (18)

Arrhythmia An electrocardiographicfinding of an atypicalcardiac rhythm resultingfrom a cardiac pathologicprocess.

Syncope Sudden loss ofconsciousness withspontaneous recovery.

Other chronic diseases

Unknown





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Social History

Living Arrangement Other persons who livewith the patient at home.

Check all thatapply.

Lives with mother

Lives with father

Lives with step-mother

Lives with step-father

Lives with partner/spouse

Lives with aunt

Lives with uncle

Lives with foster parent

Living with sibling

Living with legal guardianother than above

Living alone

Siblings n Yesn Non Other

Education Highest educationattained.

n Grade schoolcompletion

n High schoolcompletion

n Collegen Graduate studiesn 504 plann IEP

Grade school completion Completed the first 6 or 8grades of education.

NCI Thesaurus(10)

High school completion Completed secondaryeducation through 12th or13th grade as required bythe school system.

NCI Thesaurus(10)

College Completion of education atan institution of highereducation created toeducate and grant degrees;often a part of a university.

NCI Thesaurus(10)

Graduate studies Completion of a program ofstudy of at least the full-time equivalent of $1academic years of workbeyond the bachelor’sdegree.

504 plan A plan created undersection 504 for childrenwith disabilities identifiedunder the law to allow foraccommodations for thechild to be able to achieveacademic success in primaryor secondary school.

IEP Individualized educationplan in primary andsecondary school.




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Employment The state of beingengaged in an activity orservices for wages orsalary.

n Full-timen Part-timen No

NCI Thesaurus(10)

Full-time Employed for a standardnumber of hours of workingtime, at least 50% or20 h/wk.

NCI Thesaurus(10)

Part-time Employment involving lessthan the standard orcustomary working time.

NCI Thesaurus(10)

No

Alcohol Use Current or previous useby the patient of anyalcohol.

n Yesn Non Unknown

Data elementis for patient.

Tobacco Use Current or previous use ofany tobacco productincluding cigarettes,cigars, pipes, and chewingtobacco. (Captured assmoking status.)

n Current every daysmoker

n Current some daysmoker

n Former smokern Never smokern Smoker, current

status unknownn Unknown if ever

smokedn Heavy tobacco

smokern Light tobacco

smoker

HealthIT.gov.Meaningful UseDefinition &Objectives (15)

Current every day smoker

Current some day smoker

Former smoker

Never smoker

Smoker, current statusunknown

Unknown if ever smoked

Heavy tobacco smoker

Light tobacco smoker

Illicit Drug Use The nonmedical use ofchemicals that areprohibited byinternational law.

n Yesn Non Unknown

World HealthOrganization (34)

CABG indicates coronary artery bypass graft; CAD, coronary artery disease; CHD, congenital heart disease; IEP, individualized education plan; NCI, National Cancer Institute; NICHD,National Institute of Child Health and Human Development; MI, myocardial infarction; and PCI, percutaneous coronary intervention.




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Terminology Concept Concept DefinitionSuggested Data

Element Permissible ValuePermissible Value

Definition Parent Field Sources Mappings

Vital Signs – Weight A measurement that describes the vertical forceexerted by a mass of the patient as a result ofgravity.

Weight Numeric, in kg 0.2–500

Vital Signs – Height A measurement that describes the verticalmeasurement or distance from the base, or bottom,of the patient, to the top of the patient; this can betaken as the dimension of extension of a patientwho cannot stand.

Height Numeric, in cm 10–230

Vital Signs – BMI A measurement that is used to indicate the body fatan individual is carrying based on the ratio of weightto height as measured in kilograms per squaremeters.

BMI Numeric, in kg/m2

Vital Signs – BSA A measurement that indicates overall patient sizeincorporating one of several different acceptedequations, as measured in square meters.

BSA Numeric, in m2

Vital Signs – RABP A measurement that describes the pressure of thecirculating blood against the walls of the bloodvessels. Measurement is taken from the right arm.

RABP, displayed assystolic pressureover diastolicpressure

Numeric, in mm Hg

Vital Signs – Other ExtremityBlood Pressure

A measurement that describes the pressure of thecirculating blood against the walls of the bloodvessels. Measurement is taken from extremitiesother than the right arm.

Other extremityblood pressure

Numeric, in mm Hg

Vital Signs - BodyTemperature

A measurement that describes the amount of heatinside the body.

Temperature Numeric, inFahrenheit or Celsius

95–107 degrees, forFahrenheit35–41.7 degrees forCelsius

Vital Signs – Heart Rate A measurement that describes the frequency of rateof contractions of the systemic (often left) ventriclemeasured within a unit time.

Heart rate Numeric, in beats perminute

0–300

Vital Signs – Respiratory Rate A measurement that describes the rate of breathing(inhalation and exhalation) measured within a unittime.

Respiratory rate Numeric, in breathsper minute

0–100

Vital Signs – OxygenSaturation

A measurement that describes the determination ofoxygen-hemoglobin saturation of blood.

Oxygen saturation Numeric, in % 20–100

BMI indicates body mass index; BSA, body surface area; BP, blood pressure, mmHg, millimeter mercury; and RA, right arm.

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TerminologyConcept Concept Definition

Suggested DataElement Label Permissible Value Permissible Value Definition Parent Field Sources Mappings

Cardiac Examination –

Anterior ChestInspection

Inspection of the regionof the anterior surface ofthe chest and epigastricarea.

Anterior chestinspection

n Normaln Symmetricn Asymmetryn Hyperactiven Sternotomy scarn Thoracotomy scarn Pectus excavatumn Pectus carinatum

Normal Inspection of the region of the anteriorsurface of the chest and epigastric areasthat reveals a normally shaped thorax, freefrom any infection, other form of disease ormalformation or asymmetry; and a point ofmaximal impulse (apical impulse) that is asingle outward impulse, usually locatedinside the mid clavicular point at theintercostal space 5.

Symmetric Inspection of the region of the anteriorsurface of the chest and epigastric areasthat reveals an approximatecorrespondence of form and constituentconfiguration on opposite sides of a verticalcentral dividing line.

Asymmetry Inspection of the region of the anteriorsurface of the chest and epigastric areasthat reveals disparate configuration onopposite sides of a vertical central dividingline.

Hyperactive Inspection of the region of the anteriorsurface of the chest and epigastric areasthat reveals a highly or excessively activeor hyperkinetic apical impulse

Sternotomy scar Replacement of destroyed tissue by fibroustissue due to a surgical procedure where avertical inline incision is made along thesternum, after which the sternum itself isdivided.

Thoracotomy scar Replacement of destroyed tissue by fibroustissue due to a surgical procedure where anincision (cut) was made into the chest wallto the left or to the right of the midline.


B. Cardiac Examination


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Pectus excavatum A clinical finding in which there isdepression of the sternum visible onexamination of the chest.

Schlant RC, Hurst JW. Examination ofthe Precordium: Inspection andPalpation. Examination of the Heart,Part 3. Dallas, TX: American HeartAssociation; 1990 (26)

Pectus carinatum A clinical finding in which there isprotuberance of the sternum visible onexamination of the chest.


Precordium, PalpationPalpation of the part ofthe chest wall that islocated anterior to theheart.

n Normaln Hyperdynamicn Thrilln Lift or heaven Tapn Palpable heart soundn PMI

Normal A clinical finding in which palpation of thechest wall anterior to the heart revealsnormal location and characteristic of theright ventricular and apical impulseswithout other palpable impulses.

Hyperdynamic A clinical finding in which palpation of theprecordium reveals a hyperkinetic cardiacimpulse with increased amplitude andforcefulness.


Thrill A clinical finding in which hummingvibration; accompanying a loud, harsh orrumbling murmur felt during palpation ofthe precordium or over the blood vessels.

Otto CM, Bonow RO. Valvular heartdisease. In: Bonow RO, Mann DL, ZipesDP, et al eds. Braunwald’s HeartDisease: A Textbook of CardiovascularMedicine. 9th ed. Philadelphia, PA:Elsevier Health Sciences; 2011:1468-5(36)

Lift or heave A clinical finding in which there is anabnormally increased and sustainedsystolic pulsation found on palpation of thechest wall over the heart, including over aventricle or the pulmonary artery area. Thisis typically associated with increased bloodvolume or pressure in the associatedchamber.


Tap A clinical finding in which there is anabnormally increased and localized briefpulsation found on palpation of the chestwall over the heart, typically associatedwith ventricular hypertrophy or increasedintraventricular pressure.


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Palpable heart sound A clinical finding in which a heart sound isfelt during palpation of the chest wall.

PMI A clinical finding demonstrating thepulsation associated with the contractionof the systemic ventricle. Typicallyassociated with the apex of the heart.



PMI Typen Normaln Abnormally displacedn Abnormally located

Normal A clinical finding in which the PMI is locatedin the midclavicular line, fifth intercostalspace.

Abnormally displaced A clinical finding in which the PMI is locatedlateral to the anticipated position in the leftmidclavicular clavicular line, fifthintercostal space.

Abnormally located A clinical finding in which the PMI is locatedin a place other than the left anterior chest.


Heart SoundsAuditory vibrations ofvarying intensity(loudness), frequency(pitch), quality, andduration noted duringauscultation of the thoraxas part of the examinationof the cardiovascularsystem.

Heart sounds n S1n S2n S3n S4n Summation gallopn Systolic clickn Opening snapn Rubn Whoopn Knockn Murmur

S1 An auscultated finding describing the heartsound that occurs with ventricular systoleand is produced mainly by closure of theatrioventricular valves, signifying the firstheart sound.

S2 An auscultated finding describing the heartsound that signifies the beginning ofdiastole and is caused by closure of thesemilunar valves, signifying the secondheart sound.

S3 An auscultated finding describing a low-frequency sound that follows A2 in earlydiastole and corresponds with the firstphase of rapid ventricular filling, signifyingthe third heart sound. It is normal in childrenand young adults, but abnormal in others.

Shaver JA, Leonard JJ, Leon DF.Auscultation of the Heart. Examinationof the Heart, Part 4. Dallas, TX:American Heart Association; 1990 (27)



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S4 An auscultated finding that describes alow-frequency sound, heard late in diastolejust before S1, caused by forceful atrialcontractions, signifying the fourth heartsound. It is typically abnormal, except inhighly trained athletes and the elderly.


Summation gallop An auscultated finding in which S3 and S4fuse, during tachycardia or a prolonged PRinterval or both.


Systolic click An auscultated finding describing a sharp,high-frequency sound heard duringauscultation of the thorax caused by valvarprolapse or stenosis.


Opening snap An auscultated finding describing a crisp,sharp sound that can be heard in themidprecordial location, caused bythickening and deformity of theatrioventricular valve.


Rub An auscultated finding describing high ormedium pitched and scratchy sound,generated by inflammation of thepericardial sac.


Whoop An auscultated finding describing a loudmusical or sonorous vibratory systolicmurmur that may be heard in patients withatrioventricular valve prolapse.


Knock An auscultated finding describing an earlydiastolic banging sound associated withpericardial constriction.


Murmur An auscultated finding describing a seriesof audible vibrations of varying intensity(loudness), frequency (pitch), quality,configuration, and duration created byturbulent blood flow in the heart orsurrounding vessels.



Heart Sounds, S1Types

An auscultated findingdescribing the heartsound that occurs withventricular systole and isproduced mainly byclosure of theatrioventricular valves,signifying the first heartsound.

n Normally split S1n Abnormal S1n Widened split S1n Reverse split S1n Soft S1n Loud S1n Single S1

Normally split S1 Auscultated finding in which there isappropriate splitting between the closuresounds of the atrioventricular valve.



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Abnormal S1 An auscultated finding in which thecomponents of the first heart sound are notnormal.

Widened split S1 An auscultated finding in which the mitraland tricuspid closure sounds are widerapart in time than normal.

Reverse split S1 An auscultated finding in which thetricuspid valve closure sound occurs beforethe mitral closure sound.

Soft S1 An auscultated finding in which the soundscomprising the first heart sound are quieterthan normal.


Loud S1 An auscultated finding in which the soundscomprising the first heart sound are louderthan normal.


Single S1 An auscultated finding in which theatrioventricular valve closure sounds occurso close together as to sound single.



Heart Sounds, S2Types

An auscultated findingdescribing the heartsound that signifies thebeginning of diastole andis caused by closure ofthe semilunar valves,signifying the secondheart sound.

n Normally split S2n Abnormal S2n Fixed split S2n Widely split S2n Reverse split S2n Single S2n Loud P2 (pulmonary

component) of S2

Normally split S2 An auscultated finding in which thesemilunar valve closure sounds occur closetogether without occurring simultaneouslyand vary with respiration.


Abnormal S2 An auscultated finding in which thesemilunar valve closure sounds are notnormal.

Fixed split S2 An auscultated finding in which thesemilunar valve closure sounds do not varywith respiration.



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Widely split S2 An auscultated finding in which thesemilunar valve closure sounds occurfurther apart in time than normal.

The Stanford Medicine 25. Cardiacsecond heart sounds. Available at:http://stanfordmedicine25.stanford.edu/the25/cardiac.html (30)

Reverse split S2 An auscultated finding in which thepulmonic valve closure sound occurs priorto the aortic valve closure sound.

Single S2 An auscultated finding in which thesemilunar valve closure sounds occursimultaneously.

Loud P2 (pulmonary component)of S2

An auscultated finding in which thepulmonary valve closure sound is louderthan normal.


Heart Sounds,Location (IncludingMurmurs)

n Apexn Left lower sternal bordern Left middle sternal bordern Left upper sternal bordern Right upper sternal border

Apex The location on the precordium thatcorresponds to the location of the bluntextremity of the heart formed by the leftventricle.

Stedman’s Medical Dictionary. 28th ed.Baltimore, MD: Wolters Kluwer; 2006(8)

Left lower sternal border The location on the precordium thatcorresponds to the tricuspid region,between the fifth, and sixth intercostalspaces at the left sternal border; LLSB.

Tavel ME. Cardiac auscultation. Aglorious past–but does it have a future?Circulation. 1996;93:1250-3 (28)

Left middle sternal border The location on the precordium thatcorresponds to the region between thethird and fifth intercostal spaces at the leftsternal border.

Seeabove.

Left upper sternal border The location on the precordium thatcorresponds to the pulmonic region,between the second and third intercostalspaces at the left sternal border.


Seeabove.

Right upper sternal border The location on the precordium thatcorresponds to the aortic region, betweenthe second and third intercostal spaces atthe right sternal border.




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Cardiac Examination – Heart Sounds, Phase of Murmur n Right middle sternal bordern Right lower sternal bordern Right lung field/right chestn Left lung field/left chestn Left anterior axillary linen Left axillan Right anterior axillary linen Right axillan Backn Infraclavicular, leftn Infraclavicular, rightn Systolicn Diastolicn Continuousn Continuous with diastolic

spillovern Ejection systolic murmur

Right middle sternal border The location on the precordium thatcorresponds to the region between thethird and fifth intercostal spaces at theright sternal border.

Right lower sternal border The location on the precordium thatcorresponds to the region between thefifth, and sixth intercostal spaces at theright sternal border.

Right lung field/right chest The location on the thorax thatcorresponds to the location of the pleuralapices, middle and lower or base,posteriorly, laterally and anteriorly of theright lung, covered during auscultation.

Adapted from YourDictionary. Lung-fields definition. Available at:http://www.yourdictionary.com/lung-fields (35)ANDChandrasekar A. Auscultation of lungs -method of exam. Loyola UniversityMedical Education Network. Availableat: http://www.meddean.luc.edu/lumen/meded/medicine/pulmonar/pd/pstep29.htm (13)

Left lung field/left chest The location on the thorax thatcorresponds to the location of thepleural apices, middle and lower orbase, posteriorly, laterally and anteriorlyof the left lung, covered duringauscultation.

Lung part[for lung field]

Entire lung and leftlung structure[for entireleft lung]

Adapted from YourDictionary. Lung-fields definition. Available at:http://www.yourdictionary.com/lung-fields (35)ANDChandrasekar A. Auscultation of lungs -method of exam. Loyola UniversityMedical Education Network. Availableat: http://www.meddean.luc.edu/lumen/meded/medicine/pulmonar/pd/pstep29.htm (13)



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Left anterior axillary line The location on the thorax delineatedby a coronal line on the anteriortorso marked by the anterioraxillary fold on the left side.

Trunk structure andvertical reference lineOREntire axillary regionand structure of leftaxillary region

Left axilla The location on the thorax delineatedby a pyramid-shaped space formingthe underside of the shoulder betweenthe upper arm and the side of thechest on the left side.

Entire axillary region andstructure of left axillaryregion

Mosby, Inc. Mosby’s Dictionary ofMedicine, Nursing & HealthProfessions. St. Louis, MO: Mosby/Elsevier; 2009 (23)

Right anterior axillary line The location on the thorax delineatedby a coronal line on the anterior torsomarked by the anterior axillary foldon the right side.

Trunk structure andvertical reference lineOREntire axillary regionand structure of rightaxillary region

Right axilla The location on the thorax delineatedby a pyramid-shaped space formingthe underside of the shoulder betweenthe upper arm and the side of thechest on the right side.

Entire axillary region andstructure of right axillaryregion

Back The location on the thorax thatdescribes the posterior portion of thetrunk of the human body between theneck and the pelvis; the dorsum.

Back structure, includingback of neck

Infraclavicular, left The location that describes the anteriorportion of the thorax directlybelow the left clavicle.

Thoracic structure

Infraclavicular, right The location that describes the anteriorportion of the thorax directly below theright clavicle.

Thoracic structure

Systolic The phase of time during ventricularejection in which the semilunar valve(s)are open.

Heart murmur,categorized by timing

Diastolic The phase of time between ventricularejection, in which the semilunar valve(s)are closed.

Heart murmur,categorized by timing

Continuous The phase of time encompassingboth systole and diastole.

Heart murmur,categorized by duration,and heart murmur,categorized by timing

Fang J, O’Gara P. The history andphysical examination: evidence-basedapproach. In: Libby PP, Bonow RO,Mann DL, et al, eds. Braunwald’s HeartDisease: A Textbook of CardiovascularMedicine. 8th ed. Philadelphia, PA:Elsevier Science; 2008:138-9 (14)



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Continuous with diastolic spillover The phase of time encompassing systoleand the early part of diastole.

Ejection systolic murmur An auscultated finding of a heart murmurheard predominantly in midsystole, whenejection volume and velocity of blood floware at their maximum; it is produced byejection of blood into the pulmonary arteryand aorta. Typically crescendo-decrescendo.

Midsystolic murmur


Heart Sounds, SystolicMurmur Types

n Shortn Mediumn Longn Pansystolic/holosystolicn Early systolicn Midsystolicn Late systolicn Early diastolicn Middiastolicn Late diastolic

Short A brief length of time after onset of a valveclosure sound.

Heart murmur,categorized by duration

Medium A medium length of time after a valveclosure sound.

Long An extended length of time after a valveclosure sound.

Heart murmur,categorized by duration

Pansystolic/holosystolic A length of time occupying the entiresystolic interval, from first to second heartsounds.

Systolic murmur

Early systolic A period of time describing the earlyportion of the ventricular ejection phase.

Midsystolic A period of time describing the middleportion of the ventricular ejection phase.

Systolic murmur Walker HK, Hall WD, Hurst JW. ClinicalMethods: The History, Physical, andLaboratory Examinations. 3rd ed.Boston, MA: Buttersworths; 1990 (32)

Late systolic A period of time describing the last half ofthe ventricular ejection phase. This may ormay not extend to the second heart sound.

Cardiac feature Walker HK, Hall WD, Hurst JW. ClinicalMethods: The History, Physical, andLaboratory Examinations. 3rd ed.Boston, MA: Buttersworths; 1990 (32)



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Cardiac Examination – Heart Sounds, Timing n Middiastolicn Late diastolicn To and fro or systolic-

diastolic murmur

Middiastolic A period of time describing the middleportion of the ventricular filling phase.

Late diastolic A period of time describing the last half ofthe ventricular filling phase. This may ormay not extend to the first heart sound.

To and fro or systolic-diastolicmurmur

An auscultated finding associated with theaccentuation of a heart murmur duringboth ventricular ejection and ventricularfilling phases.

Sarkar A. Bedside Cardiology. NewDelhi, India: Jaypee Brothers MedicalPublishers (P) Ltd; 2012 (25)


Heart Sounds, Pitchn High frequencyn Medium frequencyn Low frequency

High frequency An auscultated finding in which aheart sound is heard only with thediaphragm of the stethoscope.

Frequencies and generaladjectival modifier

Medium frequency An auscultated finding in which a heartsound with both the diaphragm and thebell of the stethoscope.

Frequencies

Low frequency An auscultated finding in which a heartsound only with the bell of thestethoscope.

Frequencies and generaladjectival modifier


Heart Sounds, Graden Grade In Grade IIn Grade IIIn Grade IVn Grade Vn Grade VI

Grade I An auscultated finding that is very soft orintermittently heard.

Grade II An auscultated finding that is as loud as thebreath sounds.

Grade III An auscultated finding that is louder thanthe breath sounds.

Grade IV An auscultated finding that is louder thanthe breath sounds in the presence of apalpated thrill.



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Grade V An auscultated finding that is heard withthe stethoscope on a 45-degree angleOR on its side in the presence of apalpated thrill.

Grade VI An auscultated finding that is heardwith the stethoscope off of the chestwall OR with the naked ear.


Heart Sounds,Murmurs,Characteristic

n Vibratoryn Blowingn Harshn Multifrequencyn Squeakyn Machineryn Nonspecific

Vibratory An auditory quality with a distinctgroaning, croaking, buzzing ortwanging quality.

Heart murmur,categorized by quality

Blowing An auditory quality similar to thesound of a person blowing air.

Heart murmur,categorized by quality

The American Heritage MedicalDictionary. Boston, MA: HoughtonMifflin Company; 2007 (9)

Harsh An auditory quality in which flowsounds to be highly turbulent.

Heart murmur quality,harsh

McConnell ME, Adkins SB 3rd, HannonDW. Heart murmurs in pediatricpatients: when do you refer? Am FamPhysician. 1999;60:558-64 (20)

Multifrequency An auditory quality in which multiplefrequencies are heard eithersimultaneously or in rapid succession.

Squeaky An auditory quality in which theturbulence is brief and noted with thediaphragm of the stethoscope only.

Machinery An auditory quality in which turbulencesounds similar to the workings of anindustrial machine.

Nonspecific An auditory quality in which there areno recognizable characteristics todescribe the turbulent sound.

AHA indicates American Heart Association; and PMI, point of maximum impulse.


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C. Extracardiac Examination

Terminology Concept Concept DefinitionSuggested DataElement Label Permissible Value Permissible Value Definition

ParentField Sources Mappings

General Examination

General Appearance n Well perfusedn Poorly perfused

Well perfused A clinical finding in which there is sufficientblood flow to the core and extremities.

Poorly perfused A clinical condition in which there isinsufficient blood flow to the core or to theextremities.

Skin Examination Examination of the skin onphysical examination.

Extremityappearance

n Normaln Pallorn Flushingn Diaphoresis

Normal A clinical description of the skin in whichthere is appropriate color and perfusion.

Pallor A clinical finding in which there appears to bea loss of color and/or perfusion, or a whiteappearance.

Flushing A clinical finding in which there is reddeningof the skin, typically with increased perfusion.

Diaphoresis A clinical finding in which there is excessive orunpredictable sweating.

Examination of the Abdomen

Abdominal Examination –

AuscultationAbdominal findings onauscultation.

n No abdominal bruitsn Abdominal bruits

No abdominal bruits A clinical finding in which there is absence ofvascular sounds heard over major arteries inthe abdomen.

Abdominal bruits A clinical finding in which there is thepresence of turbulent vascular sounds heardover one or more major arteries in theabdomen.

Walker HK, Hall WD, Hurst JW.Clinical Methods: The History,Physical, and LaboratoryExaminations. 3rd ed. Boston, MA:Buttersworths; 1990 (32)

Abdominal Examination –

PalpationAbdominal findings onpalpation.

n Normaln Hepatomegalyn Splenomegaly



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Normal A clinical finding in which there is noorganomegaly or masses found on palpatingthe abdomen.

Hepatomegaly A clinical finding in which the liver is found tobe enlarged on abdominal palpation.

Splenomegaly A clinical finding in which the spleen is foundto be enlarged on abdominal palpation.

Abdominal Inspection n Normaln Protuberantn Scaphoid

Normal A clinical finding in which there are noabnormal findings on visual inspection of theabdomen.

Protuberant A clinical finding in which there is unusual orprominent convexity of the abdomen onvisual inspection.

Scaphoid A clinical finding in which the anteriorabdominal wall is sunken or has a concaveappearance on visual inspection.

Examination of the Genitalia

Genital Examination –

External GenitaliaExamination findings of theexternal genitalia onphysical examination.

n Normaln Edematous scrotum

Normal A clinical finding in which the male externalgenitalia demonstrate no anomalies orabnormal findings on visual inspection.

Edematous scrotum A clinical finding in which the scrotal skin isfound to have become taut due to excessivefluid as noted on visual inspection.

Examination of the Extremities

Examination ofExtremities – Appearance

Examination findings on theappearance of extremitieson physical examination.

Extremityappearance

n Normaln Cyanosisn Clubbingn Edema

Normal A clinical finding in which the extremitiesdemonstrate no anomalies of appearanceor color.

Cyanosis A clinical finding in which the skin is noted tohave a bluish cast due to an increasedconcentration of deoxyhemoglobin incutaneous blood vessels on visual inspection.



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Clubbing A clinical finding in which the distal phalanxof each finger appears rounded and bulbous,the nail plate is more convex, and the anglebetween the plate and the proximal nail foldappears increased to $180 degrees on visualinspection.

Edema A clinical finding in which there is theaccumulation of excessive fluid in theinterstitial spaces, and appears as swelling onvisual inspection.

Examination of theExtremities – CapillaryRefill Time

The capillary nail refill test,also called the nail blanchtest, is performed on thenail beds as an indicator oftissue perfusion (theamount of blood flow totissue) and dehydration.

Capillary refill time(in seconds)

n Normaln Delayed

Normal A clinical finding in which a capillary nail refilltest returns to pink color in <2 seconds afterpressure is removed.

Delayed A clinical finding in which a capillary nail refilltest returns to pink color in >2 seconds afterpressure is removed.

Examination ofExtremities – Pulses,Amplitude

n 0 (absent)n 1þ (decreased)n 2þ (normal)n 3þ (increased)n 4þ (water hammer or

markedly increased)

0 (absent) A clinical finding in which palpation of a pulsedemonstrates no upstroke or amplitude.

1þ (decreased) A clinical finding in which palpation of a pulsedemonstrates a diminished upstroke and/oramplitude.

2þ (normal) A clinical finding in which palpation of thepulse demonstrates appropriate upstroke,amplitude, and decay.

3þ (increased) A clinical finding in which palpation of thepulse demonstrates a significantly increasedupstroke and/or amplitude.

4þ (water hammer ormarkedly increased)

A clinical finding in which palpation of thepulse demonstrates a significantly increasedupstroke, amplitude, and rapid decay.



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Examination ofExtremities – Pulses,Location

n Brachialn Ulnarn Radialn Femoraln Dorsalis pedisn Posterior tibialn Carotidn Abdominal aorta

Brachial The artery of the upper arm, whose pulse canbe palpated on the inner surface of the upperarm between the bodies of the biceps andtriceps muscles.

Ulnar The artery of the lower arm that supplies themedial part of the anterior compartment ofthe forearm, wrist and hand, the superficialstructures of the central palm and most ofthe palmar and distal dorsal aspects of thefingers, whose pulse can be palpated on theflexor surface of the wrist medially.

Radial The artery of the lower arm that suppliesmuscles of lateral portions of both theanterior and posterior compartment of theforearm, lateral aspect of the wrist, skin ofthe dorsum hand and proximal portions ofdigits, and deep muscles of pain whosepulsations can be palpated on the flexorsurface of the wrist laterally.

Femoral The artery of the groin that supplies thelower extremity, including the anterior andanteromedial surfaces of the thigh, whosepulse is palpable below the inguinal ligament,midway between the anterior superior iliacspine and the symphysis pubis.

Dorsalis pedis The artery of the foot that supplies themuscles on the dorsum of the foot whosepulses can be palpated on the dorsum of thefoot just lateral to the extensor tendon of thebig toe.

Posterior tibial The artery of the foot that supplies theposterior and lateral compartment of the legwhose pulses can be palpated as it passesbehind the medial malleolus of the ankle.



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Carotid The artery of the neck that arises from theaortic arch and terminates in the external andinternal carotid arteries whose pulse can bepalpated just medial to thesternocleidomastoid muscle.

Abdominal aorta The lower part of the aorta in the abdomenprior to its bifurcation to the iliac arteries,whose pulse can be palpated at the level ofthe umbilicus.

Examination ofExtremities – Radial-Femoral Lag

Delay between the upstrokeof the right radial pulse anda femoral pulse. Presenceindicates coarctation of theaorta.

n Absentn Present

Absent A radial-femoral lag (or brachial-femoral lagor delay) is not present.

OSCE Skills. Peripheral vascular(PVS) examination. Available at:http://www.osceskills.com/e-learning/subjects/peripheral-vascular-examination/ (24)

Present A radial-femoral lag (or brachial-femoral lagor delay) is a finding on physical examinationwhen palpation of both the radial andfemoral pulses on one side of the body at thesame time, reveals a delay, suggesting thepresence of coarctation of the aorta.

OSCE Skills. Peripheral vascular(PVS) examination. Available at:http://www.osceskills.com/e-learning/subjects/peripheral-vascular-examination/ (24)


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APPENDIX 7. COMMON CARDIAC DIAGNOSES

Suggested

TerminologyConcept

ConceptDefinition

DataElementLabel Permissible Value Permissible Value Definition


Murmur n Innocent murmurn Pathologic murmurn Still’s murmurn Venous humn Innocent pulmonary

systolic murmurn Carotid bruitn Physiologic pulmonary

artery stenosisn Mammary souffle

Innocent murmur A clinical finding in which turbulent flow isnoted by auscultation that is not associatedwith any structural cardiac defects.

Pathologic murmur A clinical finding in which turbulent flow isnoted by auscultation that is associatedwith a structural cardiac defect.

Still’s murmur An innocent murmur with a mediumpitched, vibratory character heard at theapex, left lower sternal border, left middlesternal border, and right upper sternalborder that disappears or becomes quieterand localizes to the left lower sternalborder on upright position.

Venous hum An innocent murmur with a mediumpitched, blowing character with diastolicaccentuation heard at the right or leftupper sternal border that disappears withjugular venous compression or supineposition.

Innocent pulmonarysystolic murmur

An innocent murmur with a mediumpitched, harsh character heard at the leftmiddle and left upper sternal border thatdisappears with upright position.

Carotid bruit An innocent murmur with a mediumpitched, harsh character heard at the rightor left upper sternal border, supraclavicularregion, or anterior portion of the lowerneck that disappears with bilateralshoulder hyperextension.

Physiologic pulmonaryartery stenosis

An innocent murmur with a medium or highpitched, blowing character heard at the leftmiddle sternal border that can also beheard at the same volume across theprecordium and back that does notdisappear with maneuvers but is only heardin infants <6 mo of age.

Mammary souffle An innocent murmur with a medium or highpitched, blowing character with continuousflow with systolic accentuation heard overor above the breasts that disappears withcompression of the breast tissue.


TerminologyConcept

ConceptDefinition

SuggestedData

ElementLabel Permissible Value Permissible Value Definition


Hypotensionand Syncope

n Syncopen Syncope with exertionn Arrhythmogenic syncopen Syncope due to acquired

heart lesionn Syncope due to

congenital heart lesionn Syncope due to

pulmonary hypertensionn Neurally mediated/

neurocardiogenic syncopen Vasodepressor syncopen Cardioinhibitory syncopen Situational syncopen Carotid sinus syncopen Syncope due to migrainen Drug-induced syncopen Psychogenic syncopen Dysautonomian Familial dysautonomia

(Riley-Day, hereditarysensory and autonomicneuropathy type III)

n Neurogenic orthostatichypotension (multiplesystem atrophy,Shy-Drager syndrome)

n Postural orthostatictachycardia syndrome

n Hypotensionn Hypotension due to

cardiac dysfunctionn Hypotension due to drugn Orthostatic intolerancen Chronic orthostatic

intolerancen Dizziness

Syncope A condition in which there is a sudden, briefloss of consciousness associated with lossof postural tone from which there isspontaneous recovery.

Syncope with exertion A condition in which syncope occurs eitherduring or after physical activity.

Arrhythmogenic syncope A condition in which syncope occurs due toan arrhythmia.

Syncope due to acquiredheart lesion

A condition in which syncope occurs due toa disease process of the heart with whichthe patient was not born.

Syncope due to congenitalheart lesion

A condition in which syncope occurs due toa disease process of the heart with whichthe patient was born.

Syncope due to pulmonaryhypertension

A condition in which syncope occursassociated with a sudden and severeincrease in pulmonary vascular resistance.

Neurally mediated/neurocardiogenic syncope

A condition in which syncope occurs due toa brief imbalance of the autonomic nervoussystem.

Vasodepressor syncope A condition in which neurally mediatedsyncope occurs in which the blood pressurefalls and the heart rate increases.

Cardioinhibitory syncope A condition in which neurally mediatedsyncope occurs in which the blood pressurefalls and heart rate falls.

Situational syncope A condition in which neurally mediatedsyncope occurs due to a specificcircumstance, such as micturition,defecation, coughing, or traction of the hair.




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TerminologyConcept

ConceptDefinition

SuggestedData



Carotid sinus syncope A condition in which neurally mediatedsyncope occurs due to massage of thecarotid body.

Syncope due to migraine A condition in which syncope occursassociated with the occurrence of cerebralvasospasm.

Drug-induced syncope A condition in which syncope occurs due tothe ingestion or administration of achemical substance.

Psychogenic syncope A condition in which syncope occurs due toa conversion disorder.

Dysautonomia A condition in which there is a severeimbalance in the autonomic nervoussystem.

Familial dysautonomia(Riley-Day syndrome,hereditary sensory andautonomic neuropathytype III)

A dysautonomia due to a genetic disorderassociated with an abnormality of thesensory and autonomic nerves, decreasedsensation of pain and decreased productionof tears.

Neurogenic orthostatichypotension (multiple systematrophy, Shy-Dragersyndrome)

A condition in which there is neurologicdegeneration, postural tachycardia, andmuscular rigidity.

Postural orthostatictachycardia syndrome

A type of chronic orthostatic intolerancelasting $3 months associated withexcessive upright tachycardia in theabsence of orthostatic hypotension, plus aconstellation of typically daily symptomsthat may include lightheadedness,dizziness, nausea, dyspnea, diaphoresis,headache, fatigue and other symptoms ofautonomic dysfunction. Excessivetachycardia is defined by present consensusas a heart rate increase of at least30 beats/min in adults (40 beats/minfor adolescents), or a heart rate>120 beats/min, within 10 min of uprighttilt table testing.

Hypotension A condition in which the blood pressure isless than the below the fifth percentile orbelow 2 standard deviations of the meanfor age and sex.

Hypotension due tocardiac dysfunction

A condition in which there is hypotensionbecause of inadequate pumping function ofthe heart.

Hypotension due to drug A condition in which there is hypotensionbecause of the effects of a medication orother substance.

Orthostatic intolerance A condition in which there is the presenceof $1 symptoms (e.g., dizziness,lightheadedness, nausea, dyspnea, visionchange) occurring specifically whenassuming or maintaining upright positionand resolving in the seated or supineposition.

Chronic orthostaticintolerance

A condition in which there is orthostaticintolerance lasting for at least 3 mo withassociated functional impairment.

Dizziness A condition in which the sensation oflightheadedness or a feeling of movementwithin the head occurs.





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TerminologyConcept

ConceptDefinition

SuggestedData



Chest Painand Angina

n Chest painn Noncardiac chest painn Angina pectorisn Stable anginan Unstable anginan Prinzmetal anginan Microvascular angina

(Syndrome X)n Musculoskeletal

chest painn Musculoskeletal chest

pain due to costochon-dral junction syndrome(Tietze)

n Musculoskeletal chestpain due tocostochondritis

n Musculoskeletal chestpain due to rib injury

n Musculoskeletal chestpain due to slipping ribsyndrome

n Musculoskeletal chestpain due to sternal injury

n Musculoskeletal chestpain due to intercostalmyofascial injury

n Musculoskeletal chestpain due to myositis

n Musculoskeletal chestpain due to myositis:enterovirus epidemicmyalgia (pleurodynia)(Bornholm)

n Musculoskeletal chestpain: psychogenic

n Musculoskeletal chestpain: psychogenic withdysfunctional breathing(hyperventilation)

n Musculoskeletal chestpain: idiopathic/precordial catchsyndrome(Texidor’s twinge)

Chest pain Discomfort felt in the upper abdomen,thorax, neck, or shoulders.

Noncardiac chest pain A condition in which there is chest pain thatis not due to a cardiac etiology.

Angina pectoris A condition in which there is severechest pain due to myocardialischemia.

Stable angina A condition in which there is anginapectoris that occurs predictably withincreasing amounts of stress or activity,resolves with cessation of activity, and hasbeen present for $4 wks.

Unstable angina A condition in which there is anginapectoris that occurs without stressor activity, or with decreasing stressor activity compared with stableangina, and has been presentfor <2 wks.

Prinzmetal angina A condition in which there is anginapectoris due to spasm of the coronaryartery.




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TerminologyConcept

ConceptDefinition

SuggestedData



Microvascular angina(Syndrome X)

A condition in which there is anginapectoris due to occlusion of the smallercoronary arteries.

Musculoskeletal chest pain A condition in which there is chest pain dueto an etiology in the structures making upthe chest wall.

Musculoskeletal chestpain due to costochondraljunction syndrome (Tietze)

A condition in which there ismusculoskeletal chest pain associated withlocalized inflammation of at $1 jointsbetween the rib and the costal cartilage.

Musculoskeletal chest paindue to costochondritis

A condition in which there ismusculoskeletal chest pain associated withinflammation of $1 ribs and/or cartilages.

Musculoskeletal chest paindue to rib injury

A condition in which there ismusculoskeletal chest pain secondary totrauma to $1 ribs.

Musculoskeletal chest paindue to slipping rib syndrome

A condition in which there ismusculoskeletal chest pain associatedwith $1 ribs subluxing from the joint.

Musculoskeletal chest paindue to sternal injury

A condition in which there ismusculoskeletal chest pain secondary totrauma to the sternum.

Musculoskeletal chest paindue to intercostal myofascialinjury

A condition in which there ismusculoskeletal chest pain secondary totrauma to the connective tissues betweenthe ribs.

Musculoskeletal chest paindue to myositis

A condition in which there ismusculoskeletal chest pain secondary toinflammation of the muscle tissue.

Musculoskeletal chest paindue to myositis: enterovirusepidemic myalgia(pleurodynia) (Bornholm)

A condition in which there is myositissecondary to an infectious etiology.

Musculoskeletal chest pain:psychogenic

A condition in which there is the sensationof musculoskeletal chest pain due to aconversion disorder.

Musculoskeletal chest painpsychogenic withdysfunctional breathing(hyperventilation)

A condition in which there ismusculoskeletal chest pain associated withinappropriate hyperpnea or tachypnea.

Musculoskeletal chest pain:idiopathic/precordial catchsyndrome (Texidor’s twinge)

A condition in which there ismusculoskeletal chest pain characterizedby brief, sharp discomfort associated withinspiration.





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TerminologyConcept

ConceptDefinition

SuggestedData



OtherCommonClinicalFindingsNoted Duringthe Evaluationfor CardiacDisease

n Symptomaticn Asymptomaticn Hypoxemian Normal saturationn Desaturationn Heart failuren Cardiomegalyn Dyspnean Tachypnean Hyperpnean Stridorn Wheezingn Coughingn Hemoptysisn Epistaxisn Poor feedingn Anorexia nervosan Failure to thriven Hypercyanotic spelln Palpitationsn Irregular heart beatn Ascitesn Fatigue (lassitude)n Delayed developmental

milestonesn Headachen Decreased exercise

tolerancen Acrocyanosisn Breath-holding spelln Simple breath-holding

spelln Complex breath-holding

spelln Pallid breath-holding

spelln Cyanotic breath-holding

spell

Symptomatic A clinical description in which a patientdemonstrates evidence of $1 clinicalfinding suggestive of underlyingpathology.

Asymptomatic A clinical description in which a patientdoes not demonstrate evidence of clinicalfindings to suggest underlying pathology.

Hypoxemia A clinical finding in which the arterialoxygen tension is lower than the normalrange.

Normal saturation A clinical finding in which the percentage offilled hemoglobin binding sites for oxygenis within the normal range.

Desaturation A clinical finding in which the percentage offilled hemoglobin binding sites for oxygenis lower than the normal level.

Heart failure A clinical condition in which the function ofthe heart is inadequate to meet themetabolic needs of the body.

Cardiomegaly A clinical finding in which the heart is notedto be larger than normal.

.

Dyspnea A clinical finding in which there is laboredbreathing.

Tachypnea A clinical finding in which there is rapidbreathing.




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TerminologyConcept

ConceptDefinition

SuggestedData



Hyperpnea A clinical finding in which there is deeperbreathing than normal.

Stridor A clinical finding in which there is loud orharsh inspiratory noise associated withobstruction of the upper airway.

Wheezing A clinical finding in which there is a raspyhigh-pitched whistling sound noted onexpiration or inspiration associated withobstruction of the lower airways.

Coughing A clinical finding in which there is forcefulexpulsion of air with a harsh sound.

Hemoptysis A clinical finding in which blood is coughedup from the lungs.

Epistaxis A clinical finding in which there is bleedingfrom the nose.

Poor feeding A clinical finding in which a patient doesnot or is not able to take in food in normalamounts.

Anorexia nervosa A clinical disorder in which a patient has anemotional abnormality characterized by anobsessive desire to lose weight by refusingto eat.

Failure to thrive A clinical condition in which a patient hasinsufficient weight gain.

Hypercyanotic spell A clinical finding in which a patient hasprofound cyanosis associated withhyperpnea; classically associated withtetralogy of Fallot.

Palpitations A clinical historical feature in which there isthe sensation of the heart beatingabnormally in rate, rhythm, or force.

Irregular heart beat A clinical finding in which the rhythm of theheart is noted to be abnormal.

Ascites A clinical finding in which there isaccumulation of interstitial fluid in theperitoneal cavity.

Fatigue (lassitude) A clinical historical feature in which there isextreme tiredness.

Delayed developmentalmilestones

A clinical finding in which there is a failureto achieve expected mental or physicalmilestones for age.

Headache A clinical historical feature in which there iscontinuous pain in the head.

Decreased exercise tolerance A clinical finding in which there is inabilityto perform increased physical activitycompared with normal levels for self or forage.

Acrocyanosis A clinical finding in which there is a bluishcoloration noted in the distal portions ofthe extremities.

Breath-holding spell A clinical condition in which there is a briefinvoluntary cessation of breathing at end-expiration in response to emotional orpainful stimulus seen in infants, toddlers,and children.





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TerminologyConcept

ConceptDefinition

SuggestedData



Simple breath-holding spell A clinical condition in which there is abreath-holding spell without syncope.

Complex breath-holding spell A clinical condition in which there is abreath-holding spell associated withsyncope.

Pallid breath-holding spell A clinical condition in which there is abreath-holding spell associated with paleappearance.

Cyanotic breath-holding spell A clinical condition in which there is abreath-holding spell associated withcyanotic appearance.



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