Abstracting Lesson 1-3
A complete abstract contains both text and coded information. Text summarizes the cancer patient's medical experience and numerical codes collapse the text into assigned data fields. Data comparisons rely on coded information and the abstracted text verifies the codes that are assigned. All required data fields should be completed and collected following the data standards. Before leaving an abstract and moving onto the next one, a visual review of the abstract should be done.
A quick visual review at the time of abstracting, and when the information from the medical record can be recalled, promotes the completeness and accuracy of the data. Another method for evaluating the completeness of the abstract is the reports that are run against the data during the quality control process. Quality control and specific types of reports that can be run on the data is discussed in another course in this program.
For this reason, a great deal of emphasis is placed on using the manuals and referring to both the item specific instructions as well as the general coding rules for guidance on how to collect that data item. This not only applies to abstractors in training, but to all registrars.Improving the standardization of data has been a top priority for the standard-setting agencies, and it has not been an easy task. Major updates are made every three years, but the work of developing these changes and getting them implemented makes it seem like changes are occurring constantly. Keeping up with the changes is a large part of the registrar's role. Explore the standard setter's websites and look at the number of revisions to these manuals that have occurred over the years. There are many. By utilizing the resources that are available to you (and which you will learn about in this program), keeping up with the changes is made a little easier.
Abstracting requires the use of a variety of reference manuals. Some are necessary for proper abstracting while others serve to aid in the process. The reference manuals that a registrar uses may vary. They also depend on the requirements of the governing agency to which the registry submits data. At times, the registrar is faced with a case where the assignment of the correct code is difficult to determine. There are many rules and even a few exceptions to the general rule. Some of these rules are applied very rarely depending on the type of cases seen at a particular facility and the case being abstracted. By knowing what reference materials are available to the registrar, finding the appropriate instruction becomes easier. It is important to be familiar with the reference manuals used to determine the cancer registry's data set. Because these manuals undergo revisions, the registrar must also know the effective dates for the manuals in order to code cancer cases correctly.
New documents are especially susceptible to unpredicted problems. While new documents are proofread repeatedly, the actual use of a document by registrars may identify material that requires further modification. Therefore, revisions, updates, errata, and clarifications to the manuals are often released. For example, the release of FORDS: Revised for 2004 was a revision to the original release of the FORDS (in 2003) and incorporated the changes required for processing benign CNS tumors. More updates to FORDS came in 2007, 2009, 2010, 2011, and the last in 2013. You can also see evidence of this in the list of required manuals for this program. Those are updated annually, and that can be hard to keep up with. Enduring a period of change requires patience and organization by the registrar. Take some time to establish an effective method of periodically reviewing the websites for the key standard setting agencies and incorporating the changes into the registry.
As each major change is announced, guidelines for converting the data and how to compare data collected over long time periods are provided to assist the registry in this change. In recognition of the fact that software vendors must have time to update and test software applications, registrars must have time to implement changes in the processes of capturing this information, and the need to train all of those involved (registrars, clinicians, and administration), an implementation guideline was developed. The CoC, SEER, and NAACCR have all agreed to follow this guideline when considering changes to the data collection manuals.
To be used for cancer surveillance and research studies, the data must be reported to the appropriate agencies. Each governing agency the registry reports to provides specific standards and instructions for reporting the required data. These instructions include which data years to submit, the types of cases to include in the transmission, and a reporting schedule. Instructions on how to transmit a case that was missed from a previous year may also be included. Cases should be complete, free from errors and contain all of the information available before submission.
Basic Data Items Collected Certain basic data items are considered essential for inclusion in any cancer registry and are basic to any abstract. Other items collected will depend on the scope and type of registry (hospital-based, central, or special purpose) and the governing agencies the registry reports to. An individual hospital may add items that are of special interest to its cancer program. A central registry may require items that are important to cancer control in its area. CoC-accredited cancer programs must collect the CoC required data items. Data items fall into two general categories, patient information and tumor-specific information. A detailed description and coding instruction for these data items will be discussed later in this course.
Implementing and following a plan for quality management of the cancer registry data enhances the confidence that the data being reported is accurate. The cancer registry data may go through appropriate quality control before being released for reports and studies. Quality control of registry data includes edits, reports, visual review, and re-abstracting audits. A few examples of reports that may be created to check the quality of the data include:
Blank fields or fields coded to unknown Site and histology conflicts Site and stage conflicts Histology and grade conflicts Use of "9's or unknowns Stage and "best practice" guidelines conflicts Registrars run several different types of reports to try to identify possible errors. This is only a small example. Quality control is very important in properly representing the cancer burden within a population. Quality control can identify areas where further training or clarifications of coding instructions are needed. Various methods for performing appropriate quality control is discussed in more detail in other courses in this program.
In this situation, the patient's identifying information (name, date of birth, social security number, etc.) will only need to be entered once. Then a separate cancer record is created for that patient for each primary cancer. Each cancer record should have its own treatment record that describes how each independent cancer was treated. If, for example, treatment such as chemotherapy was given to control more than one primary, then that treatment should be coded in each treatment record. It is important to keep the facts for one cancer contained to that cancer record only and should not be used to assign codes in another unrelated primary cancer.
Cases Required to be Abstracted Cases that need to be abstracted are determined by following the guidelines of the agencies to which they report. This will include the state central cancer registry, the National Program of Cancer Registries (NPCR), Surveillance, Epidemiology and End Reports (SEER), and/or the Commission on Cancer (CoC). The registry must have the ability to identify these cases and report them to each agency. Generally, a cancer registry includes three categories of tumors:
The establishment of these standards is of major importance in enhancing the usefulness of cancer registry data. The electronic sharing of data for use in analysis, documentation and training aids are all more increasingly possible with established standards. A complete list of coding manuals and references can be found in Chapter VI of the Standards for Cancer Registries, Volume II, Data Standards and Data Dictionary.
Comparison of the Reporting Requirements While there are basic data items required by NPCR, CoC, and SEER programs, some variations do exist. Naturally, the data items within the data set will differ and overlap as the goals and purpose of the organizations differ. It is important to be knowledgeable of the data items that are required by each of the standard-setting groups in order to fully understand why the registry collects certain data items. It will also help you understand why some data items are only emphasized by the CoC and others are only emphasized by the state central cancer registry.
R up lung P D adeno, solid type with mucin produc tu sz 4 cm no lymphovas invasion tu extends across into vis pl rib,par pl chest wall soft tiss all neg surg marg neg 8 lym nds neg. As you can see, it is very difficult to determine what was involved with cancer. It is even difficult to determine where one statement stops, and another begins. The cancer registrar staged the case as a Summary Stage 2, AJCC Stage pT2N0M0. Even though the text is abbreviated and is concise, standard abbreviations were not used and the meaning of the text and abbreviations are not clear. Using this same pathology report and abbreviations found in Appendix G (and some critical punctuation!), the text is more appropriately summarized as follows: RUL lung: PD adenoca, solid type w/ mucin production; TS 4cm; No LVI; tumor ext into visceral pleura; rib, parietal pleura, chest wall, soft tissues all neg; surg marg neg; 0+8 LNs. With this summary, it is clear that the only involvement beyond the lung is the visceral pleura. All other tissues that were examined were negative. Include Dates Include Findings as well as the Name of the Procedure Include Both Positive and Negative Findings Do Not Repeat Documentation
Dates are very important. Always include dates for both treatment start and stop dates as well as dates of when diagnostic procedures were performed. Dates justify that the correct date of diagnosis was entered and takes into consideration both clinical and pathological confirmations of cancer especially when used in conjunction with ambiguous terminology. In addition, dates are used to ensure that information from procedures can be used to assign time sensitive data items such as stage and first course of treatment.
Review these additional notes about documenting text in the abstract: Computer Generated Text Text that the cancer registry software generates based on the entered code is not acceptable. Computer generated text is dependent upon the accuracy of the data entry. A common example of this is with the morphology data item. When the morphology code is entered, the corresponding text is filled in automatically in the histology text field. If an incorrect code is entered, the incorrect text will be generated. The age at diagnosis as dictated in the medical record should be recorded in the text and not the one that registry software generated. Again, if the wrong date of birth or date of diagnosis is entered, the wrong age at diagnosis will be generated. Length of Text Clarification of multiple primaries Other Key Information
Depending on the software being used, the amount of text that can be entered in each text field may vary. Some software may even allow an unlimited amount of text. Others may change to a different color or beep to indicate that any text after this point will not be transmitted. The amount of text that can be transmitted is only a certain number of characters in length. This is based on the NAACCR Record Layout and varies from 40 to 1000 characters depending on the text field. Most of the larger text fields will transmit around 1000 characters each. Any text entered after this number is not transmitted. If more than this number of characters is needed, the text can and should be continued in another unused text field. One of fields where information is commonly continued in is the "remarks" text field.
Focus on each of the specified text fields: Rx Text (BRM through Surgery) Text - Dx Proc (Lab Tests through X-Ray/Scan) Text - Histology Title Text - Place of Diagnosis Text - Primary Site Title Text - Remarks Text - Staging
Documenting Text in the Abstract Text should be an accurate, concise summary of the patient's cancer. There are certain qualities that text should have to ensure that it is useful and attains its purpose. However, it can be difficult to determine how much text to provide. Sometimes, text provides unnecessary information making it cumbersome to determine why a certain code was chosen. Other times, there is not enough text, making it impossible to determine if the code that was selected was correct.
Prepare to take a detailed look at the types of information that should be included in the abstracted text. The text fields are described in the NAACCR Standards for Cancer Registries; Data Standards & Data Dictionary, Volume II; Chapter X: Data Dictionary.
Each data item includes suggested information that should be included in the text field as well as the data items that are verified. Make sure to pay particular attention to the following sections: Rationale, Instructions, Suggestions for text, and Data items verified for each text field. Focus on each of the specified text fields:
Patient InformationTumor-specific Information Patient information items describe the patient and are not dependent on the diagnosis. These items do not change regardless of the number of primaries a patient may have. Tumor information items are specific to the diagnosis of cancer. This information is specific to one and only one primary and will differ for patients with more than one primary cancer.
Examples of patient information are: Patient name Date of birth Social Security number Race/ethnicity Sex Medical record number Current address
The correct manual should be used based on the year of diagnosis that is being abstracted. This is most commonly an issue with missed cases found in later years or at the turn of a new year when you are still collecting data on cases diagnosed the previous year. Cancer registry databases contain data spanning many years. Even though you will primarily use and apply the data standards currently in effect, the history of this data evolvement is vital to your understanding the type of information available to you in your database. For example, if you have a physician interested in conducting a study on comorbid conditions or complications that may have affected the treatment choice, you will find that cases diagnosed prior to 2003 will not contain this information. These data fields were not required for cases diagnosed before 2003. And, even more specifically, only the first six comorbidity and complication codes were collected between 2003 and 2005. Fields 7-10 were added in 2006. It is of equal importance to be knowledgeable about when staging systems change. The AJCC Cancer Staging Manual alone has been through multiple revisions.
For example, a patient with prostate cancer with a Gleason score of 7, under the 6th edition (2003-2009), would have grade 3 disease. But under the 7th edition (2010-2017), a Gleason score of 7 would represent grade 2 disease. With the 8th edition of AJCC, a Gleason score of 7 could be a grade 2 or 3, depending on the primary and secondary patterns. Knowing when these changes took effect will help you understand and explain the results of your reports. As important as it is to collect the most accurate and complete information, it is equally important to stay informed of changes and ensure those changes are incorporated into the cancer registry and the abstracting process.
A data set is a list of data items collected to meet the requirements of the organization's goals. The data set the cancer registry collects varies depending on the organization the registry reports its data to. Most cancer registries are required to meet the standards of more than one organization and may also add specific data items to meet the facility's needs.
For example, the CoC focuses on the quality of care provided by the medical facility. Therefore, a concentration of data items related to prognostic factors, treatments and services provided, and the outcomes of the patient are required. The CoC data set includes items necessary to code the AJCC TNM Stage, follow-up information, and other items required by its member organizations. The SEER data set, on the other hand, is designed to meet the goals of epidemiological research and data quality analysis.
When reviewing the medical record, it is imperative that registrars have complete information and access to all of the documentation and reports for procedures that were ordered. Be sure to look for and carefully review all appropriate documentation, particularly those listed below. If a particular report is indicated, and it is not included in the medical record, it should be obtained and reviewed before completing the abstract. An effort should be made to obtain all missing reports pertinent to the management of the patient's cancer.
History and physical examination (H&P) Reports of diagnostic procedures (x-rays, scans, and lab tests) Consults Progress notes Nurses notes Discharge summary Operative report(s) Pathology report(s) Treatment summaries
The abstract is not complete until all information related to the patient's initial diagnosis and treatment of cancer is included on the cancer registry abstract. All required data items must be completed on the abstract and included in the submission of data. Often diagnostic procedures or treatment are not delivered at the reporting facility. Depending on the registry's reporting requirements, the registrar must obtain this information from other facilities or physician offices and include the information in the abstract before submission. There are several methods for obtaining this information, including contacting the managing physician either by phone or by sending a letter requesting the needed information.
If a case is incomplete, the registry database should have a process to flag incomplete cases so they are not submitted until all information is included. The flag would also serve as a way to track those cases that need more information. This could be as simple as a field in the registry database.
There are many different text fields in which information can be entered. The amount of text and the text fields that are used will depend on the type of case being abstracted. For example, diagnostic and staging procedures are done to determine areas of the body involved with cancer before making a determination on the best course of treatment. Different primary sites require different types of workup. Therefore, there may not always be every type of workup for every case. These fields are provided as a guide as to the type of information that is needed to help describe the cancer.
If most of the pre-operative work-up was done at the reporting facility and the patient was sent elsewhere for treatment, then most of the information may be applicable to the physical exam, x-ray/scan, scopes, and lab test text fields. If the patient had the work-up done elsewhere and the treatment at the reporting facility, then there may be more information available for the treatment text fields.
Changes to Reporting Guidelines Because cancer registry data is so specialized and coded in such detail, manuals and coding instructions are continually being evaluated and revised. Periodically, corrections and additions to manuals are published. It is important that these changes are made to the manuals so that the most current information is being used to collect the data. Some of the factors that go into whether or not a data item is revised is based on problems experienced with inconsistency in how the data is collected or whether it is effectively being utilized in cancer surveillance and control. Changes and updates are made for several reasons, including:
Improving the clarity and quality of the data standards such as correcting print errors or rephrasing instructions that were found to be confusing; Continuing to ensure that cancer registry data support the meaningful evaluation of patient diagnosis, treatment, and outcomes; Ensuring that the data continues to be structured and maintained with standardized quality control mechanisms.
Coding allows statements and wording to be standardized into a specific code with a specific definition. In order to tabulate, summarize, and analyze cancer registry data, data items must be coded. Coding a specific data item can require summarizing volumes of information from multiple reports and visits into a single character. For the data to be standardized, it must be summarized using standard data definitions and codes. To code all data items in the data set, the use of several manuals, including the ICD-O-3, the STORE Manual, NAACCR, SEER, etc may be required.
It is important to use the appropriate reference manuals to identify and select the correct code. Most registry software programs provide help screens and drop-down lists to expedite coding. However, these should be used with caution. For example, in assigning the morphology code, it may be difficult to determine the most appropriate code for some cancers because the drop-down list may only list the preferred definition for a particular code and not all of its synonyms. As a result, the cancer registrar may default to a less specific code.
One of the most important rules of data collection is consistency. Even if it is discovered that an item has been collected incorrectly, if the item was collected consistently, corrections to the data can be much easier. Often this can be done with a global change to the database. Quality control of the registry data begins at the time of abstracting. Following the data standards during the abstracting process is an extremely important first step in ensuring the accuracy and consistency of your data. Inaccurate data or data that does not follow data standards is essentially useless because that data cannot be compared to data that was collected by another registrar.
Keep in mind while abstracting, that data travels. Once the data is collected in the facility, it is then reported to the state's central cancer registry, to the CoC's NCDB, or to the SEER national database, where it is combined with data from other facilities. In order for that data to be meaningful and mean the same thing, it has to be collected using the same set of criteria.
A common mistake found with text is that the findings are not included. For example, the text will say "mammogram abnormal" or "chest x-ray positive". Text should include both the name of the procedure performed as well as the pertinent findings. "Abnormal" or "positive" alone does not tell anything about the cancer other than these procedures were done and that "something" was found.
Knowing that certain diagnostic or staging procedures were done, and the findings were negative is important in documenting the cancer and ruling out regional or distant disease. However, when reviewing the medical record, if there is no mention of other involvement, then it can be assumed that the findings were negative.
However, the cancer registrar must make sure that the most definitive information has been recorded. For example, the stage that was based on the information available at the time of discharge may change if additional studies are performed after discharge. With any abstracting process, it is critical to establish a procedure for tracking abstracts that are waiting for more complete information and ensuring that additional information is added to abstract. Some treatment may be done in freestanding facilities, or the cancer registrar may need to contact the physician to obtain additional information for case completeness.
Methods for obtaining information within a shorter period are continually being explored. Current data collection and submission mechanisms result in data being collected and reported retrospectively. Aggregated state and national-level data may not be available for use until two years after the year of diagnosis, by which any analysis would be based on past performances. The need for more readily available, real-time information is continually increasing. In certain studies using cancer data, the need for this information demands that selected information be reported soon after diagnosis, usually before the entire abstract can be completed
The most valuable resources to registrars are the websites that maintain information related to the data standards manuals. It is important to know where to obtain information regarding the data standards manuals, including errata, clarifications, corrections, and additional information. Registrars are encouraged to bookmark these websites in the browser and check them regularly for updated information.
National Cancer Institute (NCI) online: SEER Registry Operations National Cancer Institute (NCI) online: SEER Program Coding and Staging Manual American College of Surgeons (ACS) online: Registry Manuals
With the use of electronic databases, visualizing the relationship between the information related to one cancer to that of other cancers for the same patient can be difficult.
One abstract is prepared for each independent cancer. Using the rules for determining multiple primaries, it must be determined how many primaries the patient has. Rules for determining multiple primaries for solid tumors can be found in the MP/H Coding Rules Manual for cases diagnosed in 2017 or prior. For cases diagnosed in 2018 or after, please refer to the Solid Tumor Rules. For hematopoietic and lymphoid neoplasms diagnosed 1/1/2010 and later, use the Hematopoietic Database and Manual. If a patient has two separate primaries, then two separate abstracts must be prepared. Depending on the cancer registry's software, it most likely allows you to share the patient record with the individual cancer records.
In some cases, changes made by one agency will impact other agencies because of its effect on registry work. Manuals must be revised to bring these standards into alignment. For example, the information for coding Grade was expanded in response to changes in the College of American Pathologists (CAP) rules affecting the way pathologists evaluate grade for some tumors. In other situations, there is a uniform change introduced by agreement among all cancer registry standard-setters. For example, the collection of benign CNS tumors was mandated by Congress and standard procedures for coding those cases were adopted simultaneously by CoC, SEER, NPCR and individual states.
Over a longer term, registry manuals are modified to reflect changes in medical technology, changes introduced by computer technology, and changes in the uses of registry data itself. The CoC's original data collection manual, the Data Acquisition Manual (DAM), was written for use by registries that were typically not computerized at all. This manual was replaced by the Registry Operations and Data Standards (ROADS) manual and was designed for computer use in the individual registry but was found to have several limitations for shared use of data (NCDB or state central registries), especially when combining required and non-required data elements. The Facility Oncology Registry Data Standards (FORDS) was introduced in 2003 specifically to respond to practice and registry data uses. The latest update, the Standards for Oncology Registry Entry (STORE Manual), was introduced in 2018.
Rapid case ascertainment (RCA) is another study protocol for accelerating the central registry's reporting process for selected cancers and reducing the time for reporting selected information such as demographics, pathology reports findings, and physicians. RCA supports population-based epidemiological research and facilitates cancer prevention, and control research that requires early contact with patients. The CoC's RCRS enables accredited cancer programs to report data on patients with breast and colon cancer concurrently to facilitate quality improvement measures that will encourage good-quality, evidence-based care in a timely manner at the local level. The RCRS allows for the collection of minimum data elements necessary for breast and colon cancers to support ongoing quality-assurance programs and to evaluate and compare variations in care that are delivered to these patients. These breast and colon cancer cases are extracted in a separate file from the registry's database and transmitted to the RQRS on a locally determined schedule, which can be as soon as the day after diagnosis, allowing for real-time quality-of-care assessments.
Regardless of the method used for completing the abstract, a procedure must be in place to ensure the cancer registry abstract is complete within the required time frame specified by each governing agency. The procedure must also take into consideration other activities that may affect the abstracting time frame, such as participation in the RCA or RQRS programs, or other special studies. It is important that all these requirements be taken into consideration when determining the most feasible process for completing the abstract. The procedure should also include the process for identifying cases with incomplete information and ensuring that information is added to abstract once it is available. It is important to ensure data (especially patient treatment) are complete and accurate, and an established procedure will document the process. Analysis of first course of therapy cannot be made until all data are collected and recorded. Therefore, the abstractor should allow enough time after the cancer diagnosis for the completion of casefinding, and at least, the development of a treatment plan before beginning to abstract. Regardless of when the abstracting is started on a case, the case should not be transmitted to the state, regional, or national database until all information is available and recorded in the cancer registry abstract.
Information documented in one text field does not need to be repeated in another text field. For example, if the histology is documented in the pathology text field, it is not necessary to repeat that information in the histology text field. However, it can be helpful to use the histology text field to summarize the histology from the pathology report text field especially if there were multiple pathology reports in which the reported histology varied slightly in the descriptive terminology. Another example is Tumor Markers. For example, if ER and PR for a breast cancer case is documented in the "Labs" text field, then that information does not need to be repeated in the "Pathology" text field.
Review these additional notes about documenting text in the abstract: Computer Generated Text Length of Text Clarification of multiple primaries Other Key Information
The NPCR requires a data set that will meet the needs for focusing on cancer control and assessing timely diagnosis and reporting of cases, demographic factors affecting surveillance, first course of treatment, and mortality. This data is obtained through the efforts of the state central cancer registries. Therefore, the state's data set includes the data items that will meet the requirements set by NPCR in addition to the state's legislative mandates and internal goals.
Standards for a Complete Abstract In addition to collecting the data following the standards, data should also be as complete as possible. There are several elements that define a "complete" abstract. As previously discussed, the abstract is not limited to only the information available in the patient's medical record. All information that can be obtained should be included on the abstract. This includes diagnostic and treatment information that was delivered outside of the facility. If this information was not included in the medical record, the physician or facility that delivered this care should be contacted. It is reasonable to assume that there are going to be times when all of the information cannot be obtained all of the time for all abstracts. However, an attempt should be made to gather this information.
Requirements of Abstracted Text A complete abstract includes coded data items and typed text. For example, the data items 'Sex' and 'Race' must be coded using the valid codes specified in the data standards manual. A code of 1 is entered in the sex data item if the patient is male. A code of 01 is entered in the race data item if the patient is Caucasian. Mistakes when entering coded data items can easily be made. It is just as easy to enter a 2 (female) in the sex field as it is to enter a 1 (male). To validate that these codes are correct, text must be included to describe this information. In a designated text field, typed text such as "71yo black male" should be entered to validate the coded data items. When the abstract is reviewed for quality, the coded data items should match the typed text.
Text serves to summarize the cancer patient's medical experience and numerical codes collapse the text into assigned data fields. Data comparisons rely on coded information for analysis and statistics. When comparing hundreds of thousands of records at the national level, or even a few hundred records at the facility level, tabulating numeric codes obviously makes more sense than attempting to use the text. To ensure the reliability and accuracy of the data, abstracted text verifies the coded data items. This verification occurs when registrars conduct quality control audits within their own registry and when central cancer registry staff are reviewing abstracts received from their reporting sources.
Text Example #1 4/16/20xx WBC - 1.6; platelets - 6.0; highly suspicious for hairy cell leukemia; oncology consult requested; bone marrow studies indicated.
Text should verify unusual or rare circumstances. These most often occur with primary site and histology combinations or age and site combinations. For example, it is unusual, although not impossible, for a 40-year-old male to be diagnosed with prostate cancer. Text that includes the age at diagnosis and primary site will verify that this combination is correct.
Text benefits the registrar as well. Physicians prefer text when reviewing abstracts. If there is a question, the text can be used to verify the information without having to obtain the medical record. It is also helpful when performing internal reviews and quality control audits. Often errors can be corrected by reviewing the text and without having to obtain the medical record.
The National Program of Cancer Registries (NPCR) and the Surveillance, Epidemiology and End Results (SEER) Program require text documentation for specific data fields. While the text is transmitted to the state's central cancer registry, text is not transmitted to the NPCR and SEER program databases. The American College of Surgeons Commission on Cancer (CoC) does not require text documentation to either be collected or transmitted. Therefore, guidelines for reporting text documentation usually comes from the state's central cancer registry and usually follows the NAACCR guidelines for text documentation.
One of the most important functions of a hospital-based cancer registry is to provide an accurate account of the cancer experience in that hospital by identifying and collecting information on all cancer patients and those patients with other reportable diseases. Abstracting information is the essence of the cancer registry. Cancer registries collect information about the occurrence (or incidence) of cancer, the types of cancer that occur, their locations within the body, the extent of disease at the time of diagnosis, and the kinds of treatment given.
The abstract serves to document the cancer experience of a patient with a reportable diagnosis. The abstract is a summary of information from the medical record and other sources that is relevant to the initial diagnosis and planned first course of treatment of cancer. The abstract describes the events leading to the diagnosis of cancer and continues through the initial treatment for the identified cancer. For a person with more than one primary cancer, a separate abstract is prepared for each independent tumor that is reportable for that reporting facility based on the reportability policies in effect for the cancer registry. If the registry is performing follow-up on the patient, then the abstract also relates the outcome of the patient by maintaining the current vital status of the patient throughout the remainder of their lifetime.
What is an appropriate length of time between the diagnosis of cancer, the casefinding process, and completion of the final abstract?
The abstracting time frame defines the interval of time between a patient's initial contact with the institution with a reportable diagnosis and the completion of the abstract. Abstracting timeliness encompasses a delicate balance between making information available as soon after contact as possible and providing complete diagnosis and treatment information that may not be completed until several months later. Availability of information and intended use of the data are key factors in determining the abstracting time frame. The users of the data must be considered when making this decision. It is important for the cancer committee, administration, or other healthcare professionals to have access to current statistics collected in the cancer registry. As healthcare environments change, analysis of cases diagnosed or treated in the institution has become increasingly important to administrators.
It is not required to know the patient's disease status, only their vital status. This can only be used for survival outcomes, not disease-free survival.
The cancer registry abstract provides the means for the systematic and standardized collection of information for individuals diagnosed with cancer. The abstract is the basic format used to ensure that data collection meets the requirements defined in the cancer data collection manuals, including the data items that are collected, the length of the data field, and the valid codes that can be assigned to a particular data item. This allows the data to be compared with data from other facilities. In other words, a data item collected in one facility means the same as that same data item collected at another facility. The abstract identifies the patient, the disease, and the treatment and are used to build a database that can be used to monitor the cancer activity at the facility. One of the major responsibilities of the cancer registrar is the preparation of these abstracts.
At the central cancer registry, abstracts go through a variety of quality control processes including visual reviews, edits, and other quality control audits. When the abstract is reviewed at the central cancer registry, the medical record is not available. The text provided in the abstract is used to validate the coded data items. The text is used to verify that the coded data item is not a data entry error, a misinterpretation of the coding instructions, or a failure to apply a coding rule. At any given time, registrars have numerous daily interruptions that could result in data entry errors. Text, if provided adequately, is used to correct or substantiate the data before it is used in studies and statistical reporting. If there is a question regarding the coded data item, and the text is not sufficient, contact with the reporting facility may be necessary or a less specific code following the general coding instructions may be used.
The central cancer registry also uses text to reconcile duplicate cases. Patients that are seen at more than one facility are reported by each of those facilities. When each facility reports the case to the central cancer registry, the central database will have more than one record for that primary cancer. The central cancer registry must compare each record and merge the records into one case with the best information available for that cancer. It is very likely that there will be a discrepancy in the coded data items because the information available to each reporting facility may vary. The central cancer registry uses the text to decide which code is the most accurate. If one of the reporting facilities did not include text, the central registry will usually give priority to the abstract with text.
Measure the Quality of Abstracted Text The cancer registrar's time is limited and must be used efficiently. For new cancer registrars, deciding how much text to include and how to abbreviate the text so that others can understand it can be daunting. After completing several abstracts, it may be beneficial to examine the quality of the text. Looking at the text from a different perspective can help identify areas where the text is not sufficient or clear in what it is trying to convey. One way to audit the quality of text is to take a completed abstract, erase all the codes, and recode the case using only the provided text. If there are data items that cannot be coded, then the content of the text may not be adequate.
The exercises in this activity will replicate an audit of the quality of text. This activity consists of three exercises that each consist of a summary of an abstract including the text and coded data items for a breast cancer primary. Only a selected sample of core data items have been included in the example. The emphasis of this exercise is to evaluate whether or not the provided text sufficiently describes the coded data items. Therefore, the codes and definitions have been provided for your convenience. However, you may want to use this opportunity to familiarize yourself with the coding manuals by looking the codes up in the appropriate manuals.
Text should validate the coded data items, including: Age, sex, and race Date of diagnosis Primary site and laterality Histology, behavior, and grade Tumor size Regional nodes positive and regional nodes examined Sites of regional or distant spread Dates and types of all treatment modalities
The information from the medical record that was used to decide a code should be documented. For example, for a colon cancer with a Summary Stage of 4 (regional by direct extension and regional lymph nodes), the text should contain information pertaining to: What tissues other than the colon were involved? What lymph nodes were involved? Where was the involvement reported (radiology, operative, or pathology report)? If the text does not indicate that tissues other than the colon were involved, the accuracy of the coded summary stage value would be questioned.
In order to prepare an abstract, it is necessary to gather all available source documents. This means reviewing the patient's completed medical record. Reports for certain types of visits may not be included in the facility's medical record. For example, facility-owned or independent radiation therapy or medical oncology clinics medical records may be maintained separately in the clinic or physician practice. The hospital's database should be reviewed to ensure all inpatient admissions and outpatient visits have been included. It is important to have all of the information available before attempting to abstract the case. This not only contributes to complete information, but also allows for efficient use of the registrar's time by not having to obtain the same medical record multiple times to complete the abstract.
The medical record can be deficient of important information, especially if the medical record is being reviewed immediately after discharge. Depending on the processes in place in the health information department, the turnaround time for filing certain types of reports onto the medical record can vary. Not having this information could alter the coding choice for important data items such as stage. For example, certain laboratory and radiology reports may be maintained electronically in a separate system from the main medical record. The registrar should have access to review these reports as well. If these are not reviewed, important information regarding the diagnosis or extent of disease may be omitted.
The accuracy and completeness with which this function is performed determines the value of the registry. Users of cancer registry data must be confident that the abstracted information is a true representation of the patient's demographics, diagnosis, and treatment. This information is reported to central statewide, regional, or national population-based databases. Reliable registry data are fundamental to a variety of research efforts, including those aimed at evaluating the effectiveness of cancer prevention, control, or treatment. The ability to effectively allocate resources to these research efforts depends partly on the availability of complete, timely, and high-quality cancer data that accurately represents the cancer burden.
The process of abstracting involves more than completing the abstract. The abstracting process requires the registrar to appropriately and thoroughly identify eligible patients and gather pertinent information about the case. The registrar must then code the information into a standardized dataset. Then, the registrar must take steps to ensure the data are accurate and complete through quality control. Finally, the registrar must report the data to state and national databases. How each of these is accomplished depends on the reporting requirements in effect and the procedures in place at each individual facility.
Abbreviations are not only acceptable but are encouraged. However, standard acceptable medical abbreviations must be used. If not, the abbreviation may not be understood by other users of the data and defeats the purpose of text.
The registrar should become familiar with and use the common abbreviations and terminology listed on these pages. The following is an example of actual text submitted summarizing a pathology report:
Beginning with cases diagnosed on or after January 1, 2004, registries also began including a third category of tumor - those specified to be a benign or borderline tumor of the central nervous system. These have a behavior code of /0 and /1 in the ICD-O-3 with a site code of C70.0-C72.9 and C75.1-C75.3.
There are also a few exceptions that are not required to be collected. However, the cancer committee may have a purpose for these types of cases and require the registry to collect them for use by the facility. In situ cancers of the cervix Basal and squamous cell cancer of the skin (histology in the range of 8000 - 8110)
Any of these circumstances may require the registrar to obtain the medical record multiple times in order to obtain all of the information. The abstract cannot be considered complete until the first course of therapy has been given and all pertinent reports filed in the medical record or are available from the treating physician. A process should be in place for indicating that the abstract is incomplete and for obtaining the needed information. Many cancer registry software programs provide a data field that will allow the abstractor to flag the case as incomplete. This flag can be used to help track and follow up on cases that need more information.
There are certain circumstances under which abstracting can be done as soon as the medical record is complete. Diagnosis in which further treatment is not indicated or those who expire shortly after diagnosis may fall into this category. Advances in technology in the management and storage of medical records in an electronic format may shorten the time between case identification and abstracting. However, external delays, such as completion of treatment, can still impede a more rapid case abstracting timeframe. CoC accredited cancer programs are required to use the Rapid Cancer Reporting System (RCRS) which enables accredited programs to report data on patients concurrently. Concurrent abstracting is a process of completing the abstract as information becomes available. Information can be abstracted when a patient is discharged from the hospital and then information from later visits or from outside sources can be added as it becomes available.
Clarification that a malignancy was a recurrence, or a second primary should be included. The "remarks" field can be used to enter any previous malignancies. Some cases are quite obvious or easily differentiated. Others can be difficult to determine if it is the same or a different primary. The abstractor has the assistance of the medical record, access to the managing physician and the Solid Tumor Rules Manual and/or Hematopoietic Database and Manual to make the final decision. The information used to justify why the case is one or two primaries should be included. Examples of text documentation might be: Bilateral lung nodules consistent with metastasis per CT Primary #1 Rt breast s/p lumpectomy and RT If treatment was delayed or did not start within the time frame for first course of treatment, include clarification as to whether the treatment was first course or subsequent treatment. For example: a patient was diagnosed with prostate cancer in March and did not have treatment until July. Examples of text documentation might be: Patient requested to seek other consults. Radiation is first course per Dr. Smith. Patient did not return for treatment. PSA is now rising. Radiation is due to progression per Dr. Smith. This information may seem obvious and not very noteworthy when you are abstracting the case. However, when you take away the medical record, and you add many months in between when the case is abstracted and when it is being reviewed, this information may not be obvious. Making sure that you have clear documentation of your coding decisions at the time of abstracting will help validate and justify those decisions in the future.
There are elements of text that are commonly omitted but are extremely important. The remarks text field can be used for any additional information necessary to help explain the case. History of other cancersIf the patient has a history of another cancer, it is important to document this in the text - even if the previous cancer has already been abstracted and reported. It not only helps determine or validate the sequence code, it also helps determine if the patient really does have more than one primary. Especially with hematopoietic primaries, the date of each diagnosis and the exact type of cancer are extremely important information to include. Estimated datesIn some cases, an exact date of diagnosis, procedure, or treatment is not known. If an estimated date was recorded, the text should state that the date was an estimate. If another facility reports the same cancer, this information can be used to determine which date is most accurate. Coding dilemmasIf there was difficulty in deciding on any code in the abstract, use the text fields to justify the decision as to why that code was chosen. For example, the medical record is unclear as to the exact primary site because multiple areas were involved and a discussion with the physician advisor confirms the exact primary site. The text can be used to summarize the discussion and validate the primary site.
Examples of tumor specific information are: Date of initial diagnosis Age at diagnosis Place of residence at diagnosis Class of case Sequence number Primary site Laterality Morphology Behavior Grade Date of first contact Stage Diagnostic confirmation Dates and types of therapy Surgery Radiation therapy Chemotherapy Immunotherapy Other definitive therapy Follow-up information
These data items are generally divided into three main sections on the abstract: Patient identification Cancer identification Treatment
The cancer registry must have precise, written definitions of reportable cases. These procedures must define more than just benign, in situ, and malignant reportable cases. For example, the following factors could also affect the eligibility of a case: Registry reference date Class of case Type of admission to the reporting facility Cases reportable by agreement Ambiguous Terminology Each of the factors that affect casefinding should be clearly described in the procedure manual. Ensuring that all reportable cases are included and that they are abstracted correctly are two very important components to having a high-quality cancer registry database.
Timeline for Completing an Abstract Timing is an important component of abstracting. Cancer data that is not available in a timely manner does not accurately reflect the cancer burden and may no longer be pertinent to the current cancer surveillance efforts. On the other hand, abstracts done too quickly can be incomplete. Casefinding cannot be performed until after the diagnosis of cancer, but it may be prior to the completion of treatment.
Tumors which are specified to be malignant have a behavior code of /3 in the ICD-O-3 or the pathologist specifically states the tumor is malignant. This includes all carcinomas, sarcomas, melanomas, leukemias, and lymphomas. Although the diagnosis may not use the word "malignant," terms such as carcinoma, sarcoma, lymphoma, leukemia, and cancer are among the terms accepted as a malignant diagnoses.
Tumors which are stated to be in situ have a behavior code of /2 in the ICD-O-3 or the pathologist specifically states the tumor is in situ.
Over time, information may be added to later admissions in the patient's medical record that was missing at the time of abstracting. Therefore, it is acceptable to change the primary site, histology, or stage of disease, if, at a later time, better information is available that more precisely describes the cancer. This is sometimes the case with an unknown primary. Workup done later for the management of the metastasis may, in fact, identify the origin of the cancer. If so, the primary site should be changed from unknown to indicate the primary site of origin. It is important to remember that such changes can only be done as long as the new information supports the status of the disease at the time of diagnosis. For example, the changes to site, histology, or stage are not the result of disease progression. If so, this procedure should be followed to ensure that the information is corrected in the central database.
Uniformity is of major importance when collecting data. The primary value of data lies in being able to compare them with data from other databases. To compare data, the items must be collected in the same manner using the same rules. These rules are found in the following data standards manuals: Standards for Oncology Registry Entry (STORE) International Classification for Disease - Oncology, 3rd Edition (ICD-O-3) AJCC Cancer Staging Manual SEER Summary Staging Manual SEER Solid Tumor Rules SEER Hematopoietic and Lymphoid Neoplasm Coding Manual SEER Coding and Staging Manual NAACCR Standards for Cancer Registries
International Classification of Disease for Oncology (All programs)AJCC Cancer Staging Manual (CoC) SEER Summary Staging Manual (NPCR, SEER)Standards for Oncology Registry Entry (STORE) (CoC): Provides a context for abstracting, detailed instructions and codes for each data item, and describes the types of cases that must be abstracted and followed by the registry. It also explains the relationships among data items. SEER Coding and Staging Manual: Limited explanation of the format and definitions of the computerized record routinely submitted by each SEER participant to the National Cancer Institute (NCI). Solid Tumor Rules Manual
Use the Solid Tumor coding rules to determine the number of primaries to abstract and the histology to code for cases diagnosed 1/1/2018 and forward. The Solid Tumor coding rules and the 2018 General Instructions replace the 2007 Multiple Primary & Histology (MP/H) Rules for the following sites ONLY: Breast Colon (includes rectosigmoid and rectum for cases diagnosed 1/1/2018 forward) Head & Neck Kidney Lung Malignant CNS and Peripheral Nerves Non-malignant CNS Cutaneous melanoma 2021+ Use the 2007 MP/H rules and 2007 MP/H general instructions to determine the number of primaries to abstract and the histology to code for cases falling under the Other Sites rules diagnosed 1/1/2007 - 12/31/2022. SEER Hematopoietic and Lymphoid Neoplasm Database and Manual (Hematopoeitic and Lymphoid neoplasms ) SEER*Rx - Interactive Antineoplastic Drugs Database (Systemic therapy)
The process of abstracting involves more than completing the abstract. The abstracting process requires the registrar to appropriately and thoroughly identify eligible patients and gather pertinent information about the case. The registrar must then code the information into a standardized dataset. Then, the registrar must take steps to ensure the data are accurate and complete through quality control. Finally, the registrar must report the data to state and national databases. How each of these is accomplished depends on the reporting requirements in effect and the procedures in place at each individual facility.
When a person is admitted to a medical facility, a medical record is established. The medical record contains information about the patient's medical history, diagnosis, and treatment. With the implementation of electronic medical records, casefinding and abstracting have become more efficient. Most facility medical record systems interface with cancer registry software to upload potentially reportable cases and update last contact date for already established cases (follow-up).
Each governing agency to which the registry reports data will specify the maximum time frame for completing the abstract for each case of cancer. State and central registries have standards that must be followed for timeliness of reporting of the central registry data to the North American Association of Central Cancer Registries (NAACCR) and the National Program of Cancer Registries (NPCR). Central registries strive not only to have timely reporting but reporting that is accurate and complete. Abstracting delays from the reporting facility can impede the reporting process at the central registry such as death clearance, visual editing, case consolidation, and other quality control processes. Therefore, most central registries have their own standards for when abstracting must be completed and submitted. Reporting to the central cancer registry occurs more frequently than to the National Cancer Data Base (NCDB) and the requirements may be different. The cancer registry's policies and procedures should include the processes that are in place to ensure case completeness and timely abstracting and document the reporting deadlines for ALL governing agencies to which the registry reports.
When determining the process for abstracting cases, the following must be considered: Diagnostic and treatment reports may not be incorporated into the medical record immediately after discharge. The patient may return to the facility for continuation of care in a later admission or outpatient visit. Treatment may span a period of weeks or even months preventing complete treatment information, including start dates and summary information, to be available. Treatment and diagnostic procedures may not be delivered solely at the reporting facility. This may be given at another facility, clinic, or physician's office.
Relevant symptoms and findings should be included. Examples include: Rectal bleeding Fever and night sweats Bone pain Palpable masses Difficulty swallowing Chronic obstructive pulmonary disease (COPD)
Whether the symptom is relevant or not depends partly on the primary site and extent of disease. While rectal bleeding that is unrelated to the patient's cancer is probably not relevant for a patient with suspected breast cancer, it probably is relevant for a patient with suspected colon cancer. Some findings may not be a direct result of the cancer but may have an impact on treatment decisions. For example, treatment for a single lesion in the lung may be a resection of the tumor only. However, if the patient has a complicating factor such as COPD, the patient may not be able to undergo this treatment of choice. If the information was not used to assign a code, then it is most likely irrelevant information. On the other hand, if the information did not affect the coding decision, it is most likely irrelevant and should not be included in the text.
Each case in the suspense system must be reviewed to determine reportability (or eligibility). Before the final determination is made as to the whether a case should be reported or not, a review of the complete medical record or other source documents may be required. If reportable, the case is abstracted. If not, the case is removed from the suspense list.
While the types of cases that must be reported are fairly consistent between registries, there can be slight differences. The type of cases that must be reported depend on the governing agencies the registry reports to. These include the Commission on Cancer (CoC), SEER, the state's central cancer registry, and the facility's cancer committee. For example, registries in CoC accredited programs must report all cases required by the CoC, in addition to those cases required by the state and the cancer committee. If the registry is in a SEER region, the registry must meet the SEER reporting requirements, as well. The reference document that describes the cases the registry must report is called the reportable list.
Abbreviations have been used where possible to familiarize you with common acceptable medical abbreviations. A list of these abbreviations can be found in the NAACCR Standards for Cancer Registries; Data Standards & Data Dictionary, Volume II: Appendix G: Recommended Abbreviations for Abstractors. At the end of each exercise are three questions designed to emphasize the quality of the text.
you have circled the data items that are not described in the text, answer the questions following the exercise. Sample Abstract #2 This case represents the same patient reported by a different facility. Do the same with this example as you did with Sample Abstract #1. Using the text on the left, circle only the data items on the right that CANNOT be validated. Then, answer the questions following the exercise. Sample Abstract #3 This exercise will replicate an activity frequently performed at a central cancer registry. Often patients are seen at more than one facility for their cancer. As a result, each of those facilities will report the case to the central cancer registry. When a case is reported by more than one facility, the central cancer registry must combine each of the cases into one case that reflects the most accurate and complete information. If there is a discrepancy in the coded data items, the text is used to determine the correct code. This process is called case reconciliation or duplicate reconciliation. This exercise will use the same two abstracts that were used in Sample Abstracts #1 and #2. Using the text and coded data items from #1 and #2, create one abstract that contains the most accurate and complete information. To determine the correct code, use the codes and definitions provided with the exercise. Answer the questions following the exercise.
