Full Description
Written by a team of 85 experts and produced in cooperation with the National Cancer Registrars Association, this book is an excellent resource that provides valuable information to hospitals and outpatient treatment centers on how to set up and maintain a cancer registry. The book can be used as a basis for all disease registries, but cancer registry issues are addressed specifically. Thirty chapters address all areas of cancer registration, meeting the demands for registrars employed in hospital-based, free-standing facilities and central registries. Both the clinical and administrative aspects of the acquisition and dissemination of cancer information are addressed.
Contents
Chapter 1Introduction 2 History of Cancer Registration 2 Cancer Registries and Cancer Control 3 Cancer Registrar Education 4 Cancer Registry Data Standardization 6 Cancer Registrar and Cancer Control 6 Ongoing Registry and Registrar Issues 7 Summary 8 Study Questions 8 References 8 Chapter 2: THE NATIONAL CANCER REGISTRARS ASSOCIATION, INC. 11 Ryan Intlekofer Introduction 12 History 12 Membership 12 Governance 12 Board of Directors 12 Representatives 12 Committees 13 Special Interest Groups 13 Liaisons 14 Accomplishments 15 Future Plans 15 Summary 16 Study Questions 16 D. Hutton Gayle Greer Clutter Purpose 18 Background 18 NPCR Basics 18 Public Law 102-515 18 State Laws and Regulations 18 Reportable Cancers 19 Program Standards 19 Reporting Areas 20 NPCR Cancer Surveillance System 20 NPCR Activities 20 Funding, Technical Assistance, and Training 20 Quality Assurance 21 Computer Software 21 Annual Call for Data 22 Publications 22 Research 22 Evaluation of State and National Progress 23 Public Health Surveillance of Cancer 24 The Registry Profession and NPCR 24 NPCR and Cancer Registration 24 NPCR and Cancer Registrars 24 Conclusion 25 Study Questions 26 References 26 Chapter 4: HEALTH INFORMATION PRIVACY AND SECURITY 27 Thomas H. Faris Introduction 28 Need to Protect Confidential Information 28 Health Information and Cancer Registry 28 Notable Incidents 28 Initial Legal Protection 28 Current Drivers of Privacy and Security Protection 29 HIPAA 29 Industry Standards 30 Duty of Care 30 Patient Interests 31 Identifying Confidential Information 31 Privacy vs. Security 32 Privacy 32 Notification of Privacy Practices 33 Individual Right of Control 33 Organizational Control of Confidential Information 34 Current and Accurate Information 35 Culture of Confidentiality 35 Use of De-Identified Information 36 Complaint Handling Process 37 Security 37 Operational Policies and Procedures 37 Physical Safeguards 40 Technical Security Mechanisms 42 Summary 43 Summary of Health Insurance Portability and Accountability Act (HIPAA) Regulatory Requirements 43 Study Questions Sue Watkins Introduction 52 Legal Aspects 52 Confidentiality 53 Definition of Confidential Data 53 Personnel Policies and Procedures 53 Release of Cancer Registry Data 53 Data Security 54 Data Transmission 55 Ethical Aspects 55 Study Questions 57 References 57 Bibliography 57 Chapter 6: CANCER REGISTRY PERSONNEL, OFFICE SPACE, AND EQUIPMENT 59 Barbara M. DeCoe Scott W. Ward Introduction 60 Establishing the Caseload 60 Work Space 61 Summary 63 Study Questions 63 References 63 Chapter 7: CANCER REGISTRY BUDGET 65 Sue Watkins Introduction 66 The Role of the Cancer Registrar in the Budget Process 66 Budget Components Applicable to Cancer Registry Functions 66 Planning and Budget Cycles 67 Operating Budget 69 Capital Budget 70 Summary 70 Study Questions 71 References 71 Bibliography 72 Chapter 8: CANCER REGISTRY MANAGEMENT 73 Carol S. Venuti Barbara Zaranek Introduction 74 Cancer Registry Planning 74 Cancer Registry Position Descriptions 74 Office Management 75 Productivity Standards 75 Policy and Procedure Manual 75 Reference Date 76 Reportable List 76 Cancer Registry Organization 77 Summary 77 Study Questions 77 CANCER 79 Connie Bura Historical Overview 80 CoC Structure 80 The Approvals Program 80 The National Cancer Data Base 85 Educational Programs 86 Cancer Liaison Program 87 Standards 87 Future Directions 88 Study Questions 88 References 89 Bibliography 89 Chapter 10: CANCER PROGRAM CANCER 91 M. Asa Carter Daniel P. McKellar Richard Reiling Introduction and Background 92 Preparing for a Survey 92 Notification 92 Pre-Survey Assessment 92 Confirming the Survey Date 92 Setting the Agenda 93 Completing the SAR 93 Surveyor(s) Preparation 93 Completing the On-Site Visit 94 Discussion of Program Activity 94 Review of Additional Documentation 95 Facility Tour 95 Participation in a Cancer Conference 95 Meeting with the Cancer Registrar and Quality Control Review 95 Summation Conference 95 Post-Survey Activity 96 Facility 96 Surveyor(s) 96 The Approvals Process 96 Approval Awards 96 Technical Review 96 Approved Cancer Program Performance Report 96 Program Recognition 97 Conclusion 97 Study Questions 97 References 97 Chapter 11: JOINT COMMISSION ON of the Joint Commission 100 Quality Assurance 101 Performance Improvement 102 Agenda for Change 102 Framework for Improving Performance 103 Performance Measurement Systems 104 Summary 107 Study Questions 107 References 107 Chapter 12: CASE ASCERTAINMENT 109 Fred F. Wacker Introduction 110 Determining Reporting Methods 110 Identifying Source Documents 110 Admission and Discharge Reports 111 Disease Indices 111 Surgery Schedules 111 Pathology Reports 112 Cytology Reports 112 Nuclear Medicine Logs 112 Radiation Oncology Logs 113 Medical Oncology Logs 113 Autopsy Reports 114 Linking Identified Cases 114 Monitoring Completeness of Casefinding 115 Summary 116 Study Questions 116 References 116 Chapter 13: RAPID CASE ASCERTAINMENT 117 Carol Lowenstein Introduction 118 Methods of Case Ascertainment 118 Cost 119 Confidentiality 119 Summary 119 Study Questions 119 References 119 Chapter 14: STANDARDS FOR DATA AND DATA MANAGEMENT 121 Jerri Linn Phillips Carol Hahn Johnson Introduction 122 The Standard Setters 122 The World Health Organization (WHO) 123 The American Cancer Society (ACS) 123 The American Joint Committee on Cancer (AJCC) 123 The Commission on Cancer (CoC) of the American College of Surgeons 124 The National Cancer Data Base (NCDB) 124 The Surveillance, Epidemiology, and End Results Program (SEER) 124 The National Program of Cancer Registries (NPCR) 124 National Cancer Registrars Association (NCRA) 124 The North American Association of Central Cancer Registries (NAACCR) 124 Uniform Data Standards Committee (UDSC) of NAACCR 124 The Scope of Standards for Data and Data Management 125 Data Sets 125 Code Categories 126 Rules for Code Assignment 126 Data Edits 126 Case Consolidation 127 Cases to Be Covered by New or Changed Standards 127 Administrative Items 127 Data Management Procedures 127 Summary 128 Study Questions 128 Fritz History of Coding Neoplasms 132 Basics of Coding Neoplasms 137 Summary 138 Study Questions 140 References 140 Chapter 16: EXTENT OF DISEASE AND CANCER STAGING 143 Dianne Hultstrom Introduction 144 Purposes of Staging 144 Staging Sources 144 Physical Exam 144 Radiologic Procedures 145 Tumor Markers 147 Pathologic Exams 147 Surgical Reports 148 Progress Notes and Discharge Summaries 149 The Disease Process of Cancer 149 Staging Systems 149 Requirements for Staging 149 Summary Staging 149 SEER Extent of Disease Coding 151 American Joint Committee on Cancer (AJCC) Staging System 151 Collaborative Staging 152 Other Common Staging Schemes 153 Time Frames for Including Extent of Disease in Staging 154 General Guidelines 154 Common Concerns with Staging 155 Study Questions 155 References 156 Chapter 17: CANCER TREATMENT 157 Donna M. Gress Introduction 158 Surgery 158 Preventive Surgery 158 Diagnostic Surgery 158 Surgical Treatment 159 Radiation Therapy 159 Types of Radiation 159 New Types of Teletherapy 159 Radiation and Surgery 160 Radiation and Chemotherapy 160 Systemic Therapy 160 Chemotherapy 160 Classes of Chemotherapeutic Agents 162 Methods of Administration 163 Hormone Therapy 163 Hormonal Administration 164 Immunotherapy 164 Endocrine Therapy 164 Hematologic Transplants 164 Other Therapy 164 Palliative Procedures 165 Ancillary Drugs 165 Cancer Associated with Acquired Immunodeficiency Syndrome (AIDS) 165 Summary 165 Study Questions 165 References 165 Chapter 18: CLINICAL TRIALS 167 Karen I. Christie Introduction 168 Clinical Trial Phases 168 Cooperative or Intergroup Clinical Trials 168 The Institutional Review Board 168 Definition and Purpose 168 History 169 Federal Requirements 169 Approval of Clinical Trial Studies 170 Informed Consent 171 Annual Renewal of the Institutional Review Board Approval 172 Approval of Clinical Trial Revisions 172 The Office of Sponsored Research 172 Purpose and Function 172 Filing of the HHS Form 172 Aspects of the Clinical Trial 173 Patient Eligibility 173 Patient Registration 173 Data Collection 173 Drug Accountability 173 Follow-Up Data 173 Clinical Research Associates 174 The Research Team 174 Institutional Site Visits 174 Clinical Trial Group Meetings 175 Reporting and Publication of Clinical Trial Study Outcomes 175 In-House Trials 175 Ethics 175 Summary 175 Study Questions 176 References 179 Carol Hahn Johnson Carol L. Hutchison Introduction 180 Data Standards 180 Abstracting Time Frame and the Suspense Listing 181 Suspense Cases 181 Case Classification and the Data Set 181 Patient Identification 181 Accession Number 181 Sequence Number 182 Physicians and Institutions Involved with the Case 182 Cancer Identification 182 Stage of Disease at Diagnosis 182 First Course of Treatment 183 Outcomes 183 Case Administration 184 Patient Index 184 Accession Register 184 Summary 184 Study Questions 184 References 184 Chapter 20: MONITORING PATIENT OUTCOME: FOLLOW-UP 185 Donna M. Gress Introduction 186 Confidentiality 186 HIPAA 186 Requirements of the Commission on Cancer 186 Policies and Procedures 187 Cases and Frequency 187 Method 187 Data Set 187 Personnel Requirements and Resources 187 Sources and Other Contacts 190 Follow-Up Letters 190 The Follow-Up Process 190 Initiation of Follow-Up 190 Follow-Up Responses 195 Follow-Up Files 195 Computerized Registries 195 Manual Registries 195 Cancer Registry Brochures 196 Summary 196 Study REGISTRY DATA 199 Frances Ross Introduction 200 Definitions 200 Basic Methods 200 Requirements 200 Components 201 Strategies 201 Visual Review 201 Edit Checks 201 Statistical Analysis 202 Physician Supervision 202 Reabstracting Studies 202 Test-Case Studies 204 Systems to Monitor Data Quality 205 Accuracy 205 Completeness 205 Timeliness 207 Summary 207 Study Questions 207 References 207 Chapter 22: COMPUTER PRINCIPLES 209 Ted J. Williamson LeeAnn W. McKelvey The Computerized Registry 210 Software: Required Elements of a Cancer Registry 210 Data Entry 211 Data Edit Checking 211 Data Coding and Format Edits 211 Inter-Field Edits 212 Inter-Record Edits 212 Completeness Edits 212 Standardizing Edits 212 Query System 213 Reporting 213 Lists, Letters, and Abstracts 213 Statistics 213 Advanced Capabilities 214 Database Adaptability 214 Putting It All Together 214 Networking Concepts 214 Remote Operation 215 Necessary Skills 215 What about Structured Query Language (SQL)? 215 Managing a Computerized Registry 216 The Data Set 216 Abstracting: To Paper or On-Line? 216 Backup 216 A Health Maintenance Program for a Registry Computer System 217 Viruses 218 Where the Money Goes: The Cost of Computerization 219 Summary 219 Chapter Glossary and Basic Concepts 220 Study Questions 228 References 229 Chapter 23: DATABASE MANAGEMENT SYSTEMS 231 Carol L. Kosary An Introduction to Databases 232 Data Storage BC (Before Computers) 232 The Evolution of the Modern Database 232 Database Models 232 Hierarchical Models 232 Relational Models 233 Database Management Systems 234 Possible Computing Environments 234 Characteristics of Any Database Management System 236 Database Management System Support of Consolidation 237 Record Linkage 237 Future Directions of Cancer Registry Database Management Systems 238 Study Questions 240 Chapter Glossary 240 REGISTRIES 243 Mary F. Kennedy Patrick L. Fitzgibbons Introduction 244 Background 244 Needs of the Cancer Registry 245 The Road to SNOMED CT 246 SNOMED CT and ICD-O-3 247 SNOMED CT and ICD-9-CM 248 Other Cross Mappings 249 Structure of SNOMED CT 249 I. Concepts 250 II. Descriptions 250 III. Hierarchies 251 IV. Attributes 254 V. Relationships 255 VI. Concept Definitions 255 VII. Relational Tables 255 SNOMED and the CAP Cancer Protocols 256 Request Submission 259 Summary 259 Study Questions 259 References 259 Bibliography 260 Copyright Notices 260 Chapter 25: STATISTICS AND EPIDEMIOLOGY 261 Tim Aldrich Statistics 262 Basic Concepts and Terminology 262 The Z-Test 270 Hypothesis Testing 271 Comparing Two Means 272 The t-Test 272 Tests with Qualitative Data 275 Survival Analyses 277 Epidemiology 279 Epidemiological Reasoning 280 Epidemiological Measures 281 Epidemiologic Study Designs 282 Biases 284 Screening 285 Research Protocols 290 Glossary 291 Appendix I 293 Study Questions 293 References 295 Chapter 26: REPORT GENERATION 297 Karen S. Phillips Introduction 298 Objectives of this Chapter: Getting the Big Picture 298 Data Selection 299 Data Retrieval 300 Quality Control 301 Data Analysis and Interpretation 301 Data Presentation 302 Tables 302 Graphics 303 Using Color in Graphs 307 Data Comparison 308 Written Communication Skills 311 Oral Communication Skills 312 Summary 313 Study Questions 313 References 314 Chapter 27: DATA UTILIZATION 315 Suzanna S. Hoyler Karen Malnar Introduction 316 Uses of Oncology Patient Data 316 Administrative Planning and Marketing 316 Financial Analysis 317 Clinical Care 319 Cancer Control 320 Cancer Research 321 Community Uses 322 Professional Education 322 Public Education 322 Outcome Measures 324 Interpretation and Explanation of Oncology Data 325 Annual Cancer Caseload 325 Class of Case 325 Patient Demographics 326 Diagnosis-Primary Site and Histology 326 Stage Distribution 326 Treatment 326 Follow-Up 327 Recurrence 327 Physician Referrals and Usage 327 Hospital Referrals 327 Patient Satisfaction 327 Issues in Data Use 327 Release of Data 327 Comparison of Data 327 Summary 327 Study Questions 328 References 328 Chapter 28: CANCER PROGRAM ANNUAL REPORT 329 M. Asa Carter Introduction 330 Requirements of the Commission on Cancer 330 Components 330 Report Cover 330 Title 331 Title Page 331 Executive Summary or Abstract 331 Preface or Foreword 331 Table of Contents 331 List of Tables and Figures 331 Report Introduction 332 Cancer Program Activity Report 332 Cancer Committee Member Listing 332 Cancer Registry Activity Report 332 Cancer Registry Data Presentation and Primary Site Table 332 Data Comparison 332 In-Depth Report on Major Site 335 Glossary 335 Acknowledgments 335 References and Bibliography 335 Appendices 335 Data for Administrators 335 Other Sections 335 Binding 336 Timeline 336 Budget 336 Summary 336 Study Questions 337 REGISTRIES 339 Raye-Anne Dorn Betty Nielsen Judy Tryon Patricia Babin Introduction 340 Cancer Registries 340 Department of Defense Cancer Registries 340 Specialty Registries 341 Summary 342 Study Questions 342 References 342 Chapter 30: PEDIATRIC CANCERS 343 Frederick B. Ruymann Marla K. Moloney Lisa J. Wise Introduction 344 Epidemiology 344 Genetic and Environmental Factors 344 Second Malignant Neoplasms 348 Long-Term Effects 348 Chemotherapy 348 Viral Agents 349 Ethnic Factors 349 Gender 349 Age 349 Specific Malignancies 350 Leukemias 350 Brain Tumors 353 Lymphomas 354 Neuroblastoma 355 Soft Tissue Sarcomas 356 Ewing Sarcoma Group of Tumors 357 Wilms Tumor and Other Kidney Tumors 357 Bone Sarcomas 358 Liver Tumors 359 Germ Cell Tumors 360 Retinoblastoma 361 Langerhans Cell Histiocytosis 361 Pediatric Clinical Trial Groups 362 Clinical Oncology Trials 362 Staging of Pediatric Cancers 363 Analysis of Childhood Cancers 363 Molecular Analysis and Future Treatment Strategies 364 Conclusion 365 Study Questions 366 References 366 Chapter 31: THE NATIONAL CANCER DATA BASE 375 Andrew K. Stewart Purpose 376 Overview 376 Organization 376 Data Cycle 377 Call for Data 377 Data Edits 378 Writing Cases to the CoC Data Warehouse 379 Data Analysis and Evaluation 379 Data Confidentiality 382 Data Quality 383 Reports and Publications 383 Benchmark Reports 383 Publications 384 Interactions with Other National Organizations 385 Summary 385 Study Questions 385 Chapter 32: NORTH History of NAACCR 388 Membership 389 NAACCR Structure 389 NAACCR Goals and Objectives 391 Major NAACCR Activities 391 Resources and Support for Activities 393 Study Questions 394 References 394 Chapter 33: THE SURVEILLANCE, EPIDEMIOLOGY, AND END RESULTS PROGRAM 395 Carol Hahn Johnson Purpose 396 History 396 Reporting Areas 396 Goals 397 Data Collection 397 Quality Improvement 398 SEER Data Standards 399 Data Utilization 400 SEER Publications 401 SEER Stat 401 Summary 401 Study Questions 401 References 401 Chapter 34: CENTRAL CANCER REGISTRIES 403 Herman R. Menck Jerri Linn Phillips Introduction 404 Types of Central Registries 404 Administration of Central Registries 405 Legislation, Affiliation, and Governance 405 Staffing 406 Budget 407 Security/Confidentiality 408 Ethics 409 Data Set Planning Standards 409 History of Data Sets 409 Standard Setters for Central Registries 410 Data Set Content 412 Case Ascertainment 414 Reportable List 414 Casefinding (Sources of Cases) 415 Death Clearance 418 Abstracting 418 Computerization 421 Computer System Planning 422 Make-or-Buy Decision 422 Data Editing 422 Data Conversion 422 Electronic Data Interchange/Data Communications 422 Geocoding 423 Record Linkage 423 Computerized Death Clearance 423 Customized Output Programs 424 Quality Control Management of Central Registries 424 Quality Control Methods 424 Follow-Up Methods and Evaluation 427 Services Provided to Hospital Registries by Central Registries 428 Calculation and Assessment of Incidence Rates 429 Calculation and Assessment of Survival Rates 431 Uses of Cancer Registry Data 432 History of US Central Cancer Registries 435 Summary 439 Study Questions 439 References 439 Chapter 35: CANCER Differences in Other Countries 450 Basic Cancer Surveillance 450 Comparative International Research and Surveillance Potential 450 Migrant Studies 450 Early History of Cancer Registration in Other Countries 451 Uses of Cancer Registration in Other Countries 452 Current Status of Cancer Registration in Other Countries 453 Differences in the Administration and Operation 453 Summary 454 Study Questions 454 References 454 Chapter 36: OTHER HEALTH REGISTRIES 457 Ryan Intlekofer Introduction 458 Standard Elements 458 Registry Types and Data Collection 458 Data Standards 460 Funding and Management of Registries 460 Summary 463 Study Questions 463 Resources 463 References 464 Chapter 37: NETWORKING WITH ORGANIZATIONS 465 Marilyn S. Desler Introduction 466 Review of Resources 466 Acronyms 467 Summary 474 Study Questions 474 References 474 Appendix I: THE NATIONAL TERMS 501 INDEX 535
