department of health and human resources Reflections of Change by Ryan Intlekofer, RN, CTR Division of Cancer Prevention and Control National Center for Chronic Disease Prevention and Health Promotion Centers for Disease Control and Prevention (CDC) department of health and human resources

acknowledgements

The Journey Where we started Where we are Where are we going ?

Beginning History of Cancer Registration Europe Cancer was first documented as a cause of death in 1629 in the “Bills of Mortality” published annually in England. The first known systematic collection of information on cancer was the general census of cancer in London – 1728 The first reliable cancer statistics appeared in mortality figures for the city of Verona in 1842.

History of Cancer Registration in the U.S. 1913 – North American Surgeons 1930 – Hospital Based Registries 1932 – ACoS Published First Standards 1933 – 140 Cancer Clinics were approved by the ACoS 1941 – Connecticut Cancer Registry In 1913 the fourth annual Congress of North American Surgeons charged the cancer campaign committee with the collection of data on the use of radiation therapy in the management of gynecologic malignancies. The analysis demonstrated that surgery and radiation therapy were equally effective in the management of early stage cancers of the uterine cervix. The College of Surgeons introduced the concept of the cancer registry with the establishment of a bone sarcoma registry. By the 1930’s the bone sarcoma registry had grown to include other types of cancer and the ACOS published the first standards in 1932 for the evaluation of cancer clinics and registries and initiated clinical surveys and an approvals process for cancer clinics. In 1933, 140 of 200 cancer clinics were approved by the ACoS. The mandates of this regulatory process were in part responsible for the establishment of centralized, population-based cancer registries. Among the first of these was the population based Connecticut Cancer Registry which was established in the 1940’s. Many individual groups across the world were beginning to investigate cancer.

Chihuly at the Atlanta Botanical Gardens.

Inventions 1938 – ball point pen An important invention. I think it was possible that registrar’s were told, having a ball point pen will make your work faster and easier. Of course that was after a few years of being told to make do with what they had. Registrar’s are resourceful!

Setting Standards 1956 – CoC approval standards were revised and cancer registries were designated as mandatory components of Commission approved cancer programs. 1950’s – Also marked the beginning of the End Results Program. Continuous collation of cancer registry data was begun. By 1953 most registrar’s did have ball point pen. The 1953 version of the ACoS Cancer Registry Manual provided a basic guide for hospital personnel in the implementation and operation of a hospital cancer registry. This manual was 32 pages long and covered all aspects of the hospital cancer program. In 1956, the CoC made the cancer registry mandatory component for the approved cancer program. 1950’s also marked the beginning of the End Results program. From 1956-1972 the National Cancer Institute sponsored this group. The End Results Group was a set of medical school affiliated hospitals throughout the US. Those hospitals collected survival data on cancer patients diagnosed or treated at their facility. At that time, the cancer registry abstract may have been less than a page long with only a small amount of data recorded. In many cases the treatment line was – yes treatment given or no – treatment not given. Cancer was nearly always fatal. And second primary malignancies were rare – most often the patient did not live long enough to develop a second. Treatment when given was brutal. Surgeries were quite disfiguring. Radiation caused severe burns and chemotherapy included such agents as Nitrogen Mustard.

Things were starting to come together

Continued Expansion 1973 – SEER program 1974 – NCRA 1983 – CTR credentialing 1989 – National Cancer Data Base 1990 – NAACCR 1992 – NPCR

SEER Established in 1973 Case ascertainment began in the states of Connecticut, Iowa, New Mexico, Utah, and Hawaii, and the metropolitan areas of Detroit and San Francisco-Oakland. 14% population coverage SEER Expansion – Current 26% population coverage The Survival Epidemiology and End Results program was an extension of the End Results Group. The National Cancer Act of 1971 launched the nations War on Cancer. The act directed NCI to collect, analyze and disseminate all data useful in the prevention, diagnosis and treatment of cancer and report those findings to congress. The SEER program was developed. Seer case ascertainment began in 1973 in the states of Connecticut, Iowa, New Mexico, Utah and Hawaii and the metropolitan areas of Detroit and San Francisco – Oakland.

NCRA – CTR Established in 1974 CTR 2004 – 4,000 members Education Foundation established CTR Paper to Web-based exam

NCDB Established in 1989 to serve as a comprehensive clinical surveillance resource about cancer care in the US. First used to track and compare treatment of most types of cancer. Data Cycle

North American Association of Central Cancer Registries (NAACCR) Uniform data standards Education and training Certification Data aggregation and publication Promotion of cancer surveillance data use

National Program of Cancer Registries (NPCR) 1995+ 45 States, 3 territories, District of Columbia 96% population coverage SEER NPCR NPCR/SEER

Registrars remain somewhere in the midst trying to figure it all out and trying to comply with all the new regulations and requests for data.

Additional Tools SEER Self Instructional Manuals ICD-0 SEER Program Code Manual SEER Extent of Disease Manual SEER Summary Staging Manual AJCC Cancer Staging Manual CoC DAM, ROADS and FORDS To comply with the established regulations, updated and more extensive manuals, regulations and tools were added to the cancer registrar’s list of necessary work related items. The SEER Self Instructional Manuals have been revised over the years and still provide a very comprehensive tutorial in cancer registration. The ICD O first edition in 1976 was 131 pages long, the current ICD O3 has 240 pages, before errata. I know most of you are also very familiar with some if not all of these other tools. Why has this been happening? All of this happened because of the work that had been done by the registrar. Because of the solid information given to researchers – the need for better diagnostic and treatment techniques was recognized and these techniques were developed. Vast advances have been made in diagnostic radiology and diagnostic pathology. And of course, treatment modalities were changing as well. With all of these advances, more information was readily available and more information was needed to further define the type and stage of disease – and what treatments are effective or not effective. These changes required change in cancer registration. It was no longer acceptable to record – treatment - yes, treatment - no. We had been effective in our work - Some types of cancer had become curable and others controllable. Cancer was becoming more of a chronic disease. Treatment modalities have improved

Cancer Data Collection What changes have been made in cancer data collection? Fountain pen to ballpoint pen Card files to computer generated suspense lists Paper abstracts to computer database files Manually counting numbers of cases to computer generated totals

Computerization Personal computers Cancer Registry Software DOS to Windows Networks Linkages Really none of this would have been possible without computerization and the addition of powerful software. Remember going from paper to desktop computer? With the changes in requirements, computerization was really necessary just to keep up. Although, I do remember being told that the computer should make our work faster and easier and would eliminate the need for more staff.

Where are we now 2001 – ICD-O 3 Implemented new case reportability standards for the hematopoietic diseases 2004 – Benign Brain Reporting 2004 – Collaborative Stage Reporting On January 1, 2001, cancer registrars began coding primary site and morphology terms using the ICD O 3. Many hematopoietic diseases were given malignant nomenclature and over 200 new terms and synonyms were added in the narrow range of codes from M-9590 to M-9989. Of course, 2004 brought a lot of change with the addition of benign brain tumor reporting and the initiation of Collaborative stage reporting. The benign brain reporting was essentially initiated through congressional mandate due to lobbying efforts by a group of citizens who had seen the devastation of this “benign” process and who felt it should be monitored as carefully as malignant tumors are. Be careful what you wish for as ---Collaborative stage reporting was developed in response to complaints by registrars : why can’t the reporting agencies all agree on what the reporting requirements are. I was extremely grateful to have begun my registry career in a ACoS approved hospital in a SEER state. We collaborated with the SEER registry and in so doing – learned how to code with SEER rules as well as the ACoS and AJCC requirements.

Data Submission Hospital Cancer Registry State Cancer Registry NPCR In addition to receiving data from the various reporting sources, like the hospital CLICK The registrar in the central registry also receive data from other central cancer registries—called case-sharing. The registrar in the central cancer registry may report these data to any or all of several standard setters, including… CLICK … The National Program of Cancer Registries or NPCR at the CDC … The Surveillance Epidemiology and End Results Program or SEER at the NCI … The North American Association of Central Cancer Registries or NAACCR. When data are reported, they do not contain identifying information and must be reported according to the CDC, NCI, or NAACCR standards. Hospital Cancer Registry State Cancer Registry NPCR SEER NAACCR

Add collaborative stuff

Where are we going? Part of where we are – and part of where we have been is where we are going. Electronic health record HL-7 format for data Electronic path reports – and all More CoC approved facilities NPCR Include other racial and ethnic populations Estimates of case counts at the national and regional levels Trend data Expand population-based coverage Pediatric cancers Mortality data

Contact Information rbi1@cdc.gov 770-488-1075