I The HOSPITAL CANCER REGISTRY Definition, Purpose, Value, Opercition, and Cost Published by American Cancer Society, Inc. The HOSPITAL CANCER REGISTRY Definition, Purpose, Value, Operation, and Cost AMERICAN CANCER SOCIETY, INC. Reprinted, with new material added, from CA -A CANCER JOURNAL FOR CLINICIANS l'ol. 14, Nos. 4, 5, and 6,1964; and Vol. 15, No. 3, 1965. This publication was made possible through contributions of the Ameri- can public to the fight against cancer. Publication of this material does not -necessarily constitute endorsement by the American Cancer Society. Copyright 1964, 1966, by American Cancer Society, Inc. 219 East 42nd Street, New Yor'ko N. Y. 10017 Table of Contents B. Aubrey Schneider, Sc.D. (1912-1960) .. . ..................................................... iv The Tumor Registry-A Definition ........................................ .......................1 John S. Spratt, Jr., M.D., F.A.C.S. The Purpose and Value of a Hospital Cancer Registry..-.-........... ................................................. ...........................................4 Abraham Ringel, M.A. The Operation of a Hospital Cancer Registry ................. ............ 8 Abraham Ringel, M.A. Financial Aspects of a Hospital Cancer Registry .................................... 32 Abraham Ringel, M.A. Automatic Data Processing of Cancer Registry Information ........................................................................................................................ 35 Abraham Ringel, M.A. B. Aubrey Schneider, Sc.D.* (1912-1960) The effectiveness of cancer control is best measured by the end results (survival rates) attained. However, such results can be brought to light only through careful compilation of adequate clinical records covering the diagnosis, treatment and follow-up of patients with the disease.... ... The cancer registry program throughout the United States is becoming an increasingly effective force in stimulating progress in cancer control; and ... its impact is greatest in the place where it is needed most; namely, in the small general hospital. -B. Aubrey Schneider, Se.D.: Progress in Cancer Control through Cancer Registries. Ca 8: 207-210, 1958 *Dr. Schneider was Assistant Director of the Statistical Research Section of the American Cancer Society from September 1946 until his death on Septem- ber 22, 1960. He was a pioneer in the development of the cancer registry con- cept in this country and made many contributions in registry record-keeping procedures. Much of the material in this publication was developed as a result of his effort and experience. -ED IV The Tumor Registry- A Definition John S. Spratt, Jr., M.D., F.A.C.S. A tumor registry is a collection of rate or the percentage of patients re- diagnostic, therapeutic and survival ceiving definitive therapy of different data on patients with neoplastic dis- types. The treatment rate is an index eases. It is supplementary to the usual of the temerity or aggressiveness of diagnostic files of a hospital and is cancer therapy within a particular in- necessary because of the chronicity and stitution and must always be con- complex ramifications of cancer as a sidered in conjunction with the treat- disease. The end product of good can- ment mortality rates. Optimally, the cer therapy is added years of life, lived treatment rate should be as high as comfortably and productively. Because possible, commensurate with a low the history of a cancer, both before and treatment mortality rate. A low treat- after treatment, may spread over many ment rate and a high treatment mor- years, it is necessary that the cancer tality rate would indicate extremely patient be kept under physician sur- poor and inexperienced cancer therapy. veillance for a longer period of time Between these two extremes exists a than with other diseases. The tumor broad spectrum of practices that varies registry is an aid to see that this is widely with the philosophy, training done. The accumulation of biostatisti- and experience of various hospital cal data from a tumor registry can staffs. The optimum rates are the ones serve a variety of useful purposes and associated with the best end results for these are summarized in Table 1. all cancer patients and not just the Quality Control "treated" or "determinant" cases. The first purpose of a registry listed Another economically important coii- in Table 1 is quality control in the diag- sideration in the assessment of the nosis and treatment of cancer. The first quality of treatment is, of course, nior- component of quality control relates to bidity, as expressed by the total pe- the sites and stages of cancers when riod of time a patient is incapacitated first seen. The consistent discovery and by treatment. For example, are two treatment of cancer in advanced stages months of hospitalization required due may well imply that the patient-popula- to delay in recovery or rehabilitation, tion under consideration either does when two weeks should be adequate? Inot have access to, or is not utilizing The last, and most widely used, qual- the existing cancer diagnostic faciii- ty trol in the treatment of cancer . .5on ties for earlier diagnosis. is tne end results. Conventionally, the Registries are used most extensively five-year survival rate has been the in- in studying the efficacy of treatment. dex for comparison. Some cancers, bitt The first consideration is the treatment not all, have shown their lethality by Dr. Spratt is Chief Surgeon, Ellis Fischel State the end of the fifth posttreatment ca,ncer -Hospital, Columbia, Missouri. year. The wider usage of the life table 1 try is essential to the completion of Table I such studies. p Follow-uP The second major purpose of a tu- mor registry is to insure that syste- 1. Rates matic follow-up is carried out. Follow- 2. Mortality up is an expensive and time consuming 3. Morbidity the patient and End results. undertaking, both for ently, it has t 2. Follow-UP the physician. Consequ Detection of treatable disease: be looked at objectively to make certain 1. Local recurrences that the patient derives the maximum 2. Regional metastases his participa- 3. isolated remote metastases possible benefits from 4. New neoplasms tion, and that the physician's time is Palliation of untreatable cancers. for tient Accumulation of time-mortality data not consumed by unnecessary pa the assay of end results. visits. Consequently, the follow-up 3. Education @eedback of quality control data to hos- schedule must conform to the natural pital staff with comparisons to other history of each type of neoplasm. In institutions. Resident and undergraduate student this way, there is early detection of training in natural history and treat. local recurrence, regional metastases, ment of cancer. isolated remote metastases, and non- 4. Research simultaneous additional primary can- Case location Clinical-pathological-mortatity cers which may be treated effectively. correlations Through the follow-up, the physician Epidemiology Other should also become aware when the un- cured patient gets into difficulty from the progression of his cancer and will method for calculating cumulative sur- ire some of the various forms of vival rates insures a more complete =ane palliation available. The fol- use of the available data. low-up system is essential to the con- There are a number of statistical methods for ascertaining whether . tinned accumulation of time-mortality slg- data for the assay of end results. nificant differences in end results asso- ciated with various forms of treatment, Education sites and stages exist. The end results Feedback to a hospital staff of infor- should also be compared in different mation derived from a registry insures periods of time to ascertain whether the continuing education of the hos- there is continued improvement or re- pital staff in the diagnosis of cancer; gression in the quality and effective- in the appreciation of cancer as a major ness of treatment. When the end results medical problem, and in the quality of from two different populations are com- care within their institution. In resi- pared, subtle variations in population dent medical education, the registry characteristics require careful statis- can be an important tool for teaching tical scrutiny to eliminate the elements the significance of a chronic disease as of bias that would exclude comparable- a biological continuum, spreading over ness. Sometimes, these subtle differ- many years of life. There is a tendency ences can be studied only by carefully in our general hospitals, predominantly planned and randomized prospective oriented toward acute care to fail to studies which insure the similarity of create an educational environment the populations receiving alternate whereby the student and resident be- therapies. A good and permanent regis- come aware of the chronicity of some 2 human diseases. Residents in surgery Table 2 and radiotherapy, in particular, are sometimes so preoccupied with the im- OF A TUMOR REGISTRY mediacy of an operative procedure or hey fail to look nomenclature with numeri. therapeutic plan that t all basic data. into the past history of the patients, to I coding 2. A find out why the patient was so long in m ports coming for treatment, or into the future of the disease process. The trainee should realize that the uncured patient 3. Indoctrination of patient and physician to may spend several years dying from a cooperative participation. painful and debilitating disease which 4. Systematic follow-up: Numerous systems assuring peri- may exhaust his financial resources, odic contact. and ostracize him from both friend and Schedule for contacts should con- form to natural histories of different family-finally, he dies a rather lonely cancers. death. The trainee should also appre- 5. Cooperation of State Bureau of Vital I Statistics. ciate that the cured patient may ce- velop late complications as a by-product of primary treatment. with a neoplastic disease needs to be indoctrinated in the chronicity of his Research problem and the importance of main- Lastly, the registry is a working in- taining contact with his physician and, dex of biostatistical data, continually through his physician, with the tumor available for clinical research by the registry. Also, the complete coopera- medical staff. The registry facilitates tion of the State Bureau of Vital Sta- the location of cases, the determination tistics is essential for the accumulation of clinical pathological and mortality of accurate mortality data. correlations, and if sufficiently com- plete, can be used for epidemiological Summary studies. The other clinical research A tumor registry is a working index uses of the registry are limited only by of cancer cases used to study the nat- the range of imagination and insight ural history of neoplastic diseases in of an individual investigator. man. The data from a registry are used The elements necessary for the oper- to prove that cancer is prevented, cured ation of an efficient tumor registry are or palliated by various therapeutic listed in Table 2. First, the nomencla- practices. The registry, to have valid ture and staging have to be simple, and time-mortality data, and to insure that the entire body of data recorded in the the cancer patient is re-examined at registry should have a numerical cod- proper intervals, must have a link to ing system adaptable to automatic data the patient through a clinic system or processing. Only when this is done is it through the offices of physicians. Many easy to calculate the reports necessary registries, for want of a purpose, be- for quality control and to feed them come static repositories of unused data. back to the hospital staff. Such a sys- The function of registries should be tem also facilitates information-recall scrutinized to determine if the effort in- for various other purposes which the volved in maintaining the registry leads staff may require. Both the patient and to better understanding of cancer as a the physician have to understand the disease, and to better care and treat- need for the registry and be willing to ment of cancer patients in the hospital cooperate in its function. Every patient undertaking the operation of a registry. 3 The Purpose and Value of a Hospital Cancer Registry Abraham Ringell M.A. m Purpose formation about the prevalence and in- le variation in cidence of various sites and types of There is a considerab r, a well as other research in- the quality of cancer care in the cance s United States today. The Cancer Reg- formation which can only be obtained e American College from a large volume of data. There is istry Program of th no need for a great number of such of Surgeons, and the support that is . tries-a selected number, strate- given to it by the American Cancer regis the United States Society, reflect an attempt to raise it to gically located in its highest possible level. Both organi- where the volume of cancer is signifi- zations believe that one of the basic cantly large, is adequate for most pur- elements of sound cancer control is an Poses. Furthermore, the cost of operat- effective mechanism for measuring the ing and maintaining an Epidemio- quality of cancer diagnosis and treat- logical Registry, assuming qualified ment in an institution, i.e., a Hospital personnel are available, is usually more Cancer Registryp as described in the than most hospitals and communities College's Manual for Cancer Programs. can afford. In furthering a Cancer Registry Pro- The foregoing types of registries are gram, it is important to recognize the either limited in nature or have special purposes and problems connected with purposes extraneous to the primary ob- it, and to differentiate the points of jective of the American College of view that obscure its primary objective. Surgeon's Hospital Cancer Registry in general, there are three types of Program. The College recommends the cancer registries in the United States. third type of registry-the Hospital The first type may be described as Spe- Evaluatory Cancer Registry, and the cial Purpose Registries. These are lim- American Cancer Society participates ited in scope and are focused on one in the support of this program. This form or aspect of cancer: bone tumor type of registry measures the quantity registries, oral registries, pediatric and quality of medical care provided tumor registries , tissue and slide reg for cancer patients at a given institu- istries, are examples. They serve a very tion. It has been described as the "mir- useful purpose, but their primary func- ror" which can reflect to the hospital tion is education and reference. staff how well it is diagnosing and The second type of registry, the treating cancer in its hospital. As such, Epidemiological Registry, obtains in- a Cancer Registry is a medical program which must be developed in response to 31r. Ringel was formerly Conndtant for Hos- physician interest and function under pital Cancer Regisiries for the A7nerican Cancer s@ety. medical supervision and guidance. Its 4 results should be used by the hospital Surgeons has made it a requirement medical staff in evaluating procedures for approval that an annual Report of and in promoting possible improve- Survival and End Results be presented ments. A registry, conceived and or- to the medical staff. The medical staff ganized without physicians' interest, may then compare its statistics with guidance and control, will result in a published data of the National Cancer useless expenditure of time and money. Institute, and with such publications as On the other hand, a program estab- the Cancer Prognosis Manual of Dr. lished under proper auspices, with phy- Arthur G. James of the Ohio State Uni- sician interest and participation, will versity Medical Center, and at local and be an effective tool for measuring the state medical society meetings. progress of cancer control in the hospi- tal, and will provide a major stimulus Value to that control. The value of a hospital cancer regis- The American College of Surgeons try varies in direct proportion to its has indicated that the minimum con- proper organization and use. tent of a Hospital Evaluatory Cancer In initiating and promoting the indi- Registry is: (1) the name and address vidual hospital cancer registry pro- of every hospital patient, private and gram, the American College of Sur- public, inpatient or outpatient, who geons recognized this fact and has out- enters the hospital for diagnosis and/or lined both the necessary organizational treatment of cancer; (2) adequate structure and the informational re- identifying and diagnostic informa- ports that could be derived from a prop- tion; (3) a basic abstract of the clini- erly organized and active registry. cal record; and (4) an annual follow-up Thus, in listing its "Minimum Stand- note for as long as the patient remains ards for Approval of Cancer Pro- alive. From this base, the content can grams" in general hospitals, the Col- be elaborated as far as those conduct- lege notes two pre-conditions that must ing the registry desire. For such a be met before a hospital cancer registry registry to be effective, 100 per cent of can function properly and meet its re- the hospital's cancer experience, includ- quirements for approval: ing cases diagnosed without histo- 1. "Hospitals must be accredited by pathological proof, must be recorded. the Joint Commission on Accredi- Information obtained from a regis- tation of Hospitals .... try of this kind is primarily for the 2. "There shall be a committee on can- consideration of the professional staff cer of the medical staff, consisting of a hospital. Data show how the staff of physicians directly concerned is doing in the diagnosis and treatment with the conduct of the cancer pro- of cancer and are not for pure statisti- gram." cal compilation. For this reason, mini- In amplification of the second pre- mum standards of statistical accuracy condition, the College states that "this and clarity must be maintained. When committee should be a standing com- fully evaluated by a responsible medical mittee of the professional staff. Mem- staff, this information can form a basis bers named by the medical staff should of support for whatever action might be confirmed by the governing board be necessary to improve the end results of the hospital, and should include rep- in a given procedure. - resentatives from the departments of In order to encourage the evaluation surgery, internal medicine, radiology, of the data in the individual hospital and pathology. In some hospitals it may registries, the American College of also serve as the tumor board." 5 An individual hospital cancer regis- 4. The level of diagnosis (i.e., the pro- try is worthless without the approval portion of microscopically con- and involvement of the medical staff. firmed cases at the institution as This becomes apparent when we ex- compared with other institutions). amine the structure of a registry, the 5. Indication of improvement (or lack type and sources of the information to of same) in the level of diagnosis be collected, and the uses that can be over the years. made of this information. A hospital 6. The proportion of cases in which cancer registry is "the repository of the disease is localized or advanced records containing pertinent informa- at the time of diagnosis, and tion on diagnosis, treatment, follonv-up, whether this situation is changing and end results of all patients, private with time. and nonprivate, with a diagnosis of 7. The proportion of cases receiving cancer who have been admitted as in- definitive versus palliative therapy. patients or to the outpatient depart- 8. The results of diagnosis and ther- ment of the hospital." The summariza- apy in terms of survival rates. tion of this information for the regis- The information that can be made try can only be obtained from the com- available to the medical staff in the pleted hospital medical chart, together hospital can be derived only if the with supplementary information from records are caref ully kept and follow-up the departments of radiology and pa- scrupulously maintained, and the ac- thology, and follow-up information cumulated data properly and ade- from attending physicians. quately analyzed. Obviously, this infor- The College also notes that "if this mation can be of great value to the registry is to achieve its purposes, its physicians, and to local community staff is required to record data on every agencies. It provides the former with a patient admitted with the diagnosis of measure of the quantity and quality of cancer. The data properly recorded in medical care given cancer patients, and the registry should make possible a to the latter, it furnishes a guide for systematic follow-up of patients for an their public and professional education annual report to the medical staff, in- programs, and other cancer control ac- cluding an analysis of survival and end tivities. In addition, this information results, as well as for special studies. can be a stimulus for intensive research Such a report is essential to the assess- of specific diagnostic procedures and ment of the care received by patients therapeutic programs. One immediate with cancer." effect of the registry is that of greatly The components of an annual report improving the keeping of hospital rec- to the medical staff may consist of the ords as they relate to cancer, because of following information: greater interest among the attending 1. The total number of cancer cases physicians, residents, and interns, and seen in the hospital during the the necessity for providing basic infor- year. mation for the most effective analysis 2. The number of patients presenting of registry information. primary lesions versus those show- Without the interest and guidance of ing recurrences. the medical, staff, the registrar will 3. The proportion of the total case have difficulties and unresolved prob- load for whom the original diag- lems. One may encounter such -things nosis was made at the institution as "possible cancer" in the sign-out as compared with those first diag- diagnoses, and there will have to be nosed elsewhere. some "ground rules" for handling such 6 cases. How is the registrar going to re- and the medical staff, or the ad- solve any difficulties or inadequacies niinistrative departments of the that may be found with respect to the hospital. hospital charts or record-keeping pro- 5. "To maintain liaison with: cedures if there is no committee on a (a) "Other committees of the staff, par with the record committee with especially the tissue committee. which to discuss such'problems? How (b) "Cancer control activities of is the registrar going to fit the physical the community, such as state setup and the work of the registry and local elements of the smoothly into existing hospital facili- American Cancer Society and ties and procedures with a minimum of local and state departments of disruption without someone in author- health. ity working out agreements on the nec- (e) "The Department of Profes- essary arrangements? How is one to sional Services of the Ameri- establish or maintain a successful fol- can College of Surgeons and low-up program if there is no gen- the Committee on Cancer of eral agreement as to participation and the College. cooperation among the staff ? Who will 6. "To prepare the rules and regula- bring such matters as follow-up to the tions needed for the operations of attention of the staff for discussion and the program and for incorporation agreement if there is no committee or into the bylaws of the staff ; and to chairman to carry out such responsibil- maintain adequate minutes of their ities? What sort of information would committee meetings." the registrar dig out of the registry for It cannot be emphasized sufficiently a report to the staff if there is no guid- that the key for the successful organ- ance from a responsible chairman or ization and operation of an individual committee? And, even if the registrar hospital cancer registry is the active were able to prepare such a report, who interest, cooperation, and participation would present it to the staff ? of the medical staff. Such participa- It is for these and similar reasons tion can truly make the cancer registry that the College lists the following a "mirror" which reflects to the staff duties of the Committee on Cancer: what is good and what is bad with re- 1. "To furnish leadership in the can- spect to the diagnosis and treatment of cer control activities of the hospi- cancer in the institution. A registry tal, including the appointment of a without such physician interest, guid- director of the cancer clinical pro- ance, and control is a useless expendi- gram. ture of time and money. 2. "To confer with the administrator relative to equipment, space, faciii- References 1. A?)ierican College of S?irgeoiis: maiiiiat for Ca?a- ties, and other administrative mat- cer Progranis. Chicago, 1961. ters. 2. Janies, Arthur G.: Cancer Prognosis Manilat. Alew Yoik: Anierican Cancer Society, Inc., 1961. 3. "To oversee the operation of the Bibliography cancer registry, with particular at- Haeiiszel, W., and Hon. N. B.: Statistical ap- proaches to the stzidli of ca?icer with particular tention directed to the follow-up reference to case, registers. J. Chron. Dis. 4: $89- program, to the development of spe- 699,1956. Sch?ieider, A.., The key to a?t effective hospital cial studies, and to survival and c jicer registry P?-oi7rant. CA Bull. Cancer Prog. 10: l@ .174,1960. ,3 .end results reports. Sch)ieider. A.: Progress in cancer control throvgh 4. "To advise and assist in the solu- cancer registries. Ca Bull. Cancer Prog. 8: 207- 210, 19.58. tion of problems involving relation- U.S. Dept. of Health, Education, and Welfare: Your Hospitdl Cancer Registry. Washington: U.S. ships between the cancer program Govt. Pyiiit. Off., 1961. 7 The Operation of a Hospital Cancer Registry Abraham R;nget, M.A. Introduction the medical charts. A hospital cancer registry should A notation or anonymous stamp, such contain the records of all patients with as a star, is often affixed to the outside cancer diagnosed by any means, includ- cover of the medical chart to alert the ing those without microscopic confir- medical records librarian to the chart mation. Patients diagnosed as having of a cancer patient who returns as "possible" or "probable" cancer, and either an inpatient or an outpatient. treated as if they have cancer (e.g., To ensure complete coverage, lists and/ those diagnosed by clinical means only) or reports of diagnoses made in the should be included in the registry for pathology laboratory and in the radi- evaluation and comparison with pa- ology department should be made avail- tients diagnosed more definitively. On able to the registry secretary. In hos- the other hand, patients diagnosed be- pitals where outpatient charts are kept fore the start of the registry should apart from the inpatient charts, the not be included, unless all patients daily roster of visits should be avail- diagnosed in these years are also in- able to the secretary. This insures the cluded for valid comparisons between registration of new patients, and the the years. recording of follow-up information on The registry is the active file of per- patients previously registered. tinent information on the diagnosis, Registry Files and the Accession treatment, follow-up and end results of Register all cancer patients. What are the sources of this information? What kinds of The registry consists of: (1) a Site files and records are to be kept? What File, containing clinical abstracts of all information on the diagnosis, treat- registered cancer patients, with follow- ment follow-up and end results are to up notes for the lifetime of the pa- be collected? Finally, how may the in- tients; (2) a Patient Index File; and formation be summarized for presenta- (3) a Follow-up Control File. Many medical staff I? hospitals employ a "three-in-one" file tion to the hospital of abstracts in strict alphabetical or- Sources of Information der (the Master Patient Index File), The completed hospital medical employing tabs to classify them by site charts comprise the primary source of and time of follow-up. The registry information for a hospital cancer regis- should also have an Accession Register' try. In some hospitals, the medical rec- which is a list of the cancer patients ords librarian routinely sends the hos- initially admitted as inpatients or out- pital charts of all discharged cancer patients to the hospital. This is a very patients to the registry secretary be- useful tool in the preparation of admin- fore they are filed. Elsewhere, the reg- istrative and analytical reports. istry secretary receives carbon copies The Cancer Registry Abstract of the discharge sheets of cancer pa- tients, or a list of their medical chart The file of cancer registry abstracts numbers, which enables her to obtain is the most important element in all 8 cancer registry programs. These docu- the skin to best serve the needs of the ments enable the medical staff to evalu- medical staff. ate the over-all cancer problem in the How To Prepare the Cancer institution. It is a concise summary of Registry Abstract signifleant facts from hospital medical. charts on the history, diagnosis, and As noted above, the primary source treatment of every patient's cancer. It of information for the registry is the should not be a duplicate of details con- completed hospital medical chart.. From cerning symptoms, diagnostic tech- this, the abstract form should be filled niques and particulars of therapeutic out as follows: procedures. Name: Enter the family name first,, The abstract contains the minimum followed by the first and second given information necessary for a registry.',' names. When the patient is a married Additional information may be in- female, it is desirable to enter her given cluded at the discretion of the Commit-. name rather than her husband's name tee on Cancer and the medical staff. If for more precise identification, i.e., the medical chart is complete and the "(Mrs.) Jones, I%Iary," rather than Committee on Cancer provides the nec- "(Mrs.) Jones, Walter." essary guidance for the interpretation Na?ne of Spouse: Enter the name and of the medical information, a compe- address of the spouse, or close family or tent secretary can be trained in a few other contact if the patient is unmar- weeks to do the abstracting. ried or is separated from the spouse. A separate cancer registry abstract Date of Admission: Enter the date form is prepared for each primary ana- of fi?'st admission (inpatient or outpa- tomic site of cancer. (See pages 16 and tient) to the registering hospital for 17.) Thus, a patient with two or more the cancer for which the abstract is be- primary cancer sites should have sepa- ing prepared. rate abstracts for each primary cancer. Date of Discitai-ge: Enter the date of The only general exception to this rule discharge from the registering hospital is cancer of the skin. after the first admission. On June 16,1964, the Executive Com- Age or Birth Date: Enter the age at mittee of the American College of Sur- admission to the registering hospital geons Committee on Cancer ruled "that or the date of birth. In most instances, elimination of basal cell and squamous the age of the patient at admission to cell carcinomas of the skin from the the hospital and the age of the patient registry does not impair the standing at initial diagnosis of the cancer, will of the registry in the approval pro- be the same. However, when the age at gram of this College. Whether to in- initial diagnosis differs from the age clude these cases may be left to the at admission, it should be noted (in red judgment of the administration and the ink or circled) to remind the secretary staff of the individual institution." On to use the more significant age at initial the other hand, most hospitals which diagnosis in tabulations and analyses register skin cancers, prepare separate by age. This distinction should be un- abstract forms for each type of cance)-, derstood by everyone using the registry without regard to sites, i.e., one for all data. (See page 11 for the definition of basal cell, and another for all epider- the date of initial diagnosis.) moid carcinomas. Thus, an early and Race: Record whether the patient is important decision to be made by the ., White, Negro or Other, using the defi- hospital's Committee on Cancer 'is nitions of the United States Census whether or not to register cancers of Bureau. The White race includes Puer- 9 other West Indians, Mexi- Final Diagnosis: Enter only the pl'i- to Ricans, mary anatomic site of origin of the cans, and Central and South Ameri- cans; and "Other" includes all "Amer- cancer. Metastatic sites need not be re- ican Indians" and those identified as corded. When the primary site of origin "Asiatics," such as East Indians, Chi- of the malignancy is unknown, it should nese, Japanese, Korean, and so forth. be recorded as "Primary Unknown," arentage are classi- even though the metastatic site is Persons of mixed p ified according to the race of the non- known. In case of doubt, the registry white parent; and mixtures of non- secretary should consult with the Can- whites are generally classified accord- cer Committee. ing to the race of the father. In areas Basis of Diagnosis: Indicate the one where there is special interest in se- or more methods used to make the diag- lected population groups, such as Latin nosis of cancer. Thus, if the cancer was Americans or Asiaties, appropriate en- initially diagnosed by clinical means tries may be made. and subsequently verified microscopi- Ma?-ital Status: Indicate whether the - cally, both methods should be noted. patient is Single, Married, Widowed, The term "Histology" includes micro- Divorced or Separated. scopic diagnoses based on specimen Hospital Status: Check the appropri- f rom biopsy, frozen section, surgery, or ate boxes for Private or Nonprivatl--, D. & C.; also included, are positive Inpatient or Outpatient for the pa- hematological findings relative to leu- tient's hospital status at initial admis- kemia, bone marrow specimen, and sion. diagnoses based upon paraffin block Registry No.: There are two common specimens from concentrated spinal, and acceptable methods of numbering pleural, or peritoneal fluid. Diagnoses patients in the registry. One method is based on "X-ray" findings are self-evi- to number each new patient with the dent. The term "Clinical" refers to next consecutive number indefinitely, cases diagnosed by exploratory surgery beginning with the number 1; another without microscopic examination, by is to start each new calendar year of endoseopy without positive histology, registration with number I and pre- and by other clinical methods, such as cede this with tle last two digits of the palpation. "Othei-" bases of diagnosis year of accession: for example, 63-1 to should be specified. 63-260, 64-1 to 64-275, and so forth. Exfoliative Cytology: Note the type The only advantage of this latter meth- and whether the findings are negative od is that the number of cancer cases or positive. Exfoliative cytology is de- accessioned in the year is more readily fined as diagnoses based on microscopic apparent. However, it must be remem- examination of cells as contrasted with bered that all of these cases were not tissue. Included in this definition are necessarily diagnosed during that same smears from sputum, bronchial wash- year. It must be emphasized that aings, prostatic secretions, breast secre- cancer patient is identified by only one tions, gastric, spinal, peritoneal, or assigned registry number no matter pleural fluid, and urinary sediment, how many primary cancers he may'and, of course, cervical and vaginal have. smears. Hospital and Hospital No.: In the Histological Diagnosis: The diag- spaces provided, enter the name of the nosis of cancer is noted essentially in hospital and the hospital medical chart terms of anatomical site and histologi- number for this patient at the time of cal type. Although some doctors rou- initial admission to the hospital. tinely use histological terms in phras- 10 ing the diagnosis, even in the absence of the first cancer-directed therapy as of microscopic evidence, this section of appraised at the end of the first course the abstract form should contain only of treatment, or after the first hospital the summary statement on the Pathol- discharge. If the patient is untreated, ogy Report, and be left blank in the an evaluation of the stage of the dis- absence of such a report. ease at diagnosis should be recorded. Date of Diagnosis: This refers to The stage of the disease to be recorde the date of the very first diagnosis of is not defined as clinical staging; it is, this cancer by any recognized medical rather, an estimate of the stage of the practitioner, even when the diagnosis disease based on all of the evidence was not proven microscopically, or was available at the time of the first ther- confirmed much later by histology. In apy, including, in addition to the strict- other words, the date of the very first ly clinical impression, any evidence diagnosis should be entered here re- derived from X-ray, surgery, pathol- gardless of the method of diagnosis or ogy, and so forth. It could be thought where it was made. The question is of as a "corrected" clinical impres- often asked how a secretary can deter- sion! If the stage of the disease is not mine whether a patient was diagnosed explicitly stated in the medical chart, as having cancer in the absence of the cancer registry secretary should microscopic confirmation. It is the con- consult her Cancer Committee. The tention of many physicians, however, following brief definitions may be use-. that a clinical diagnosis of cancer has ful guides for staging malignancies: been made if the patient is being 1. Localized is the designation of a treated as if he had cancer. If subse- cancer that is confined to the site of quent histology disproves the clinical origin, regardless of tumor size. diagnosis, the case is to be removed 2. Regional Involvement denotes a from the registry. cancer which has passed the bounds Stage of Disease: One of the major of the site of origin, but whose fur- reasons for obtaining information con- ther spread is thought to be limited cerning stage of the disease is that it is to neighboring organs or tissues, or often the most important factor influ- to regional lymph nodes. encing the doctor's choice of therapy. 3. Remote Metastases is defined as in- Thus, it would be most logical to obtain volvement of organs or tissues be- the doctor's appraisal of the extent of yond those immediately draining or the disease before treatment is begun. neighboring the site of origin of Such information is usually not stated the malignancy.' explicitly and would require abstract- History:. Enter the date of the initial ing of records by a physician. However, diagnosis, and the date and type of it is feasible to collect information con- treatment in this section of the ab- cerning the stage of the disease at initi- stract if the case has been diagnosed ation of first treatment as appraised at and/or treated prior to admission to e a later time. Normally, the patient's registering hospital. For these cases it medical record, when completed after must be remembered that the date of the first discharge, contains statements initial diagnosis is the date of the prior and laboratory reports from which the diagnosis and not the date of diagnosis stage of the disease at initiation of at this hospital. (See preceding col- treatment can be derived. The stage of umn, paragraph 2.) This information the disease as reported on the abstract ' is generally available from the history form would, therefore, be an evaluation statement in the medical chart. of the stage of the disease at initiation Treatment: This section of the can- n- self-evident. Information concerning cer registry abstract form should co taiti information on therapeutic pro- the cancer status of the patient at dis- cedures that were provided only during charge, whether alive or dead, and if the very first hospital admission of this dead, the date of death and cause of patient for this cancer only. Treatment death should be noted. If the cancer that was provided during subsequent status of the patient cannot be deter- hospital admissions to the registering mined from the medical chart, the reg- hospital, as well as in other hospi- istry secretary should consult with the tals, should be noted on the back Cancer Committee or record it as "Un- under "follow-up information." How- known." Finally, information concern- ever, when the initial plan of treatment ing the hospital or physician responsi- extends beyond the date of discharge ble for follow-up should be noted. from the hospital, such as radiation Follow-up Information: This should therapy, this should also be included in be summarized on the back of the can- this section of the abstract. cer registry abstract form. It is sug- The End Results Program of the gested that the first line be completed National Cancer Institute defines treat- at the time the front of the cancer r.,ient as "any and all procedures or registry abstract form is first com- therapies, administered during or after pleted in order to note the survival the first clinical diagnosis of cancer, time. Thus, the "date" to be entered which usuallymodify, control, 7-emove, would be the date of discharge of the or destroy proliferating cancer tissue, patient from the hospital. "Survival whether primary or metastatic-re- time in months" is to be computed from gardless of response in a particular the date of diagnosis to the date of dis- patient. Treatment does not include charge. "Source of contact" would be procedures or therapies which are pure- the hospital chart in this instance, and 1V diagnostic, symptomatic, or sztppor- the condition of the patient would be tive. Any therapy which is not con- the same as that noted on the front of sidered cancer-directed or which does the abstract form. Thereafter, sum- not fall within the definition above is mary follow-up information relating to to be classified as 'no treatment'."' this cancer, based on visits to the out- (See pages 18 and 19 for the more com- patient department, admissions to the mon therapies an procedures.) Thus, hospital, letters to the referring physi- it is suggested that only cancer-direct- cian, or other sources, should be noted. ed therapy (as defined above) should In general, it is not necessary to post be checked in the boxes provided. The follow-up information at intervals of registry secretary should be encour- less than six months to a year, unless aged to consult with the Cancer Com- there is significant information about mittee concerning the therapies and the patient's cancer. If the patient has procedures to be recorded on the ab- undergone a long-range plan of ther- stract. However, it must be re-einpha- apy, it is recommended that the begin- sized that the registry abstract should ning date and the ending date of such not be a duplicate of the clinical details therapy be entered, that the survival in the medical chart. time be computed through the date Purpose: Indicate the one or more when last seen, and a summary state- objectives of the therapy and pro- ment of the treatment be not'ed. The cedures provided the patient. abstract is not to be used as a running Condition and Follow-up: The com- summary or clinical record of what has pletion of the final section on the front been done for the patient at each visit. of the cancer registry abstract form is Finally, information concerning the 12 cause of death, and whether or not an turns to the hospital with another pri- autopsy was performed, should be en- mary cancer, this cancer shou Id also be tered at the bottom of the form. Obvi- noted on his Patient Index Card. ously, the last date of follow-up is the The Follow-up Control File date of death, and the final survival time should be computed from the date Regular clinical follow-up examina- of diagnosis to the date of death. tion of the cancer patient, to determine Filing Cancer Registry Abstracts the presence or absence of disease and the need for further therapy, is essen- The abstracts of all patients, living tial in the proper management of the and dead, are 'Usually filed by anatomic disease. Consequently, a primary func- site of cancer in alphabetical order, tion of cancer registries is to help as- thus automatically creating a useful sure and promote periodic follow-up anatomic index. When the number of examinations, by maintaining a Fol- registered cases warrant it, two such low-up Control File of reminder cards files may be set u@ne for the active to be made out at the time of registra- cases, and one for the dead cases. The tion. The Follow-up Control Card abstracts may be filed according to the should contain the following informa- major site groupings of the Manual of tion (see page 21, bottom) : the Inte?-national Statistical Classifica- a. the name and address of the pa- tion of Diseases, Injuries and Causes tient of Death. (See page 20.) As noted h. the assigned cancer registry num- above, registries employing the "three- ber in-one" file employ tabs to classify the c. the site of cancer abstracts by anatomic sites. d. the date of diagnosis The Patient Index File e. the date when the patient was last seen The Patient Index File is a perma- f. the name of the attending physi- nent alphabetical index file, and may cian. consist of individual 3' x 5' cards for These cards should be filed in alpha- every registered cancer patient, living betical order by month of follow-up, and dead. (See page 21, top.) It is the to alert the registrar to review the pa- master control file and enables the sec- tient's medical chart at regular inter- retary to avoid duplicate accessions in vals (at least once a year), and post the registry. It should contain such follow-up information on the abstract identifying information as: form, or communicate with the attend- a. the patient's full name and address ing physician or others for follow-up h. the hospital medical chart number information. C. the patient's assigned cancer reg- Follow-up information in many in- istry number stances is obtained from readmission d. the patient's date of birth, sex, and or outpatient records ("automatic" fol- race low-up). The cancer registry secretary e. the cancer diagnosis (primary should not ask for follow-up informa- site) tion from the attending physician un- f. the date of initial diagnosis less the follow-up period (usually a 9. the name and address of the re- year) has passed since the last contact ferring physician with the patient. If the patient is no h. the (eventual) cause and date of longer under the care of a physician, death the registry secretary should obtain his If a previously registered patient re- permission to contact the patient or 13 patient's family. If the patient has survival time) for the information of moved, the postmaster may have a for- the medical staff and the hospital ad- warding address. The death registra- ministrator. (See page 27.) They may tioti files of state or local bureaus of also be used to prepare reports of sur- vital statistics will often be able to pro- vival and end results by selected sites vide information about a deceased and site groups. (See below.) How- patient, and may give the name of the ever, it must be remembered that the physician who signed the death certifl- information relating to "Date Last cate. Information about the patient Contact" and "Cancer Status This Con- may also be obtained from relatives, tact" must be entered in pencil at each the visiting nurses association, the city f ollow-itp until the death of the patient directory, other hospitals, and other so that it can be erased when the fol- social service agencies. (See pages 22 low-up information is up-dated. Sur- to 25 for sample follow-up letters.) vival time should be computed and When follow-up reveals that the pa- recorded only after the death of the tient has died, the cause and date of patient. When using this Accession death should be entered on the Pa- Register, the secretary must keep track tient's Index Card as well as on the of the assigned cancer registry num- cancer registry abstract, and notifica- bers on a separate pad or notebook. tion should be sent to the medical rec-- Keport of Survival and End Results ords librarian for entry in the hospital chart. The Follow-up Control Card The cancer registry abstract with should then be destroyed. The Follow- current information will provide the up Control Cards remaining at the end basic data for the preparation of Re- of a follow-up period represent patients ports of Survival and End Results to for whom no new information has been the medical staff. (See page 28.) This received, i.e., those lost to follow-up. is one of the requirements for approval The Accession Register by the American College of Surgeons. It is suggested that initially the hos- The Accession Register may be apital prepare a one-year report for yearly listing of all patients, their diag- cases diagnosed during a recent year. nosis, and their assigned cancer regis- Thus, if a report is to be filled out for try numbers from the date of the es- the cancer cases diagnosed in 1962, it tablishment of the registry. Patients would be necessary to obtain the cancer with multiple primary cancers will registry abstracts f or all cases diag- have only one registry number. Such nosed during that year and followed patients may be identified with a dis- for one year through 1963-the living tinctive notation, such as an asterisk, as well as those who died within the or with a notation of the other site (s). year of diagnosis. The vertical columns An alternate type of Accession Reg- on the report form can be filled in ac- ister is designed to list registered pa- cording to the groups of patients to be tients by yeai- of initial diagnosis of reported upon, such as patients for the primary lesion, by major anatomic whom there is microscopic confirma- sites or site groups. (See pages 26 and tion, patients divided by sex, race, site 20.) These lists enable the cancer reg- groups or individual sites of cancer, istry secretary to prepare summary stage of disease, age groups, and so reports of patients by anatomic sites, forth. The cancer registry abstracts and by race, sex, method of diagnosis, should then be divided into three stage and other categories (age at diag- groups: (1) those patients for whom nosis, type of initial treatment, and follow-up information is not available 14 (not followed) for the full period cov- year into three groups, and within ered by this report; (2) patients living these groups into three subgroups, it for the full period covered by this re- will then be possible to obtain the totals port; and (3) patients who have died of the various categories, and to com- within the period covered by this re- pute the follow-up and survival infor- port. Within each major group, the mation for the cases diagnosed in 1959 abstracts should then be subdivided and 1960. The two three-year reports into three additional subgroups-pa- can then be compared, and could be add- tients having evidence of cancer, no ed together to obtain a cumulative evidence of cancer, and patients for three-year follow-up and survival re- whom this information is not available. port. The number of abstracts in each of the The preparation of summary reports three subgroups should be entered on and reports of survival and end results the form and totaled. The per cent of by specific sites or site groups is a rela- patients followed during the period tively simple matter for those regis- E, and the per cent of patients who tries using the alternate type of Acces- survived during the full period covered sion Register. (See pages 26-28.) For by this report, F, can then be com- example, it is possible to prepare a five- puted according to the formula on the year report of survival for breast cases report form. diagnosed in 1958 and followed through In subsequent years, when the medi- 1963, by tabulating all of the necessary cal staff desires a report of patients for information from the Accession Regis- a two-year or three-year period, or ter List of breast cases diagnosed in longer, the registrar can obtain the ab- 1958. Similar reports may be prepared stracts of those patients who might for any period of time by site groups, have survived two, three, or more specific sites, or other variables. (See years. Thus, if a three-year survival pages 29-31.) report is to be prepared in 1964, the A properly trained cancer registry abstracts of patients diagnosed in 1959, secretary should have little difficulty in and 1960, and followed through 1962 maintaining and operating a registry, and 1963, respectively, should be re- provided she has the continuing assist- moved from the files. Following the ance and guidance of a physician su- same procedure as that outlined above, pervisor and the cooperation of the that is, sorting the abstracts for each medical staff. References 1. Anterican College of Surgeo)ts: Handbook for D.C., January 1, 1959. (Unpublished.) C'ft)tcer Registry Secretaries. Chicago, 1962. ?. Anierican College of Si(rgeo?is: Manual for Ca)i- 4.,California Tiiiiior Registry: A Gztide for the cer Progran@s. Chicago, 1961. Ti iizor Registry Secretary in Reco)-di?ig Stage. BerL,eley: State of California Depa)-ti)ieizt of Ptib- .3. Manual of the U)iifori)? Ptinch Card of the, E,,d lic Health, 1964. Res?llts Program, CC-YSC, -@%ational Cancer I)isti- tiite, U.S. Public Health Service, Departnze?it of 5. Karnofsky, D. A.: Cancer cheniothe)-apeutic Health, Educatio2i, a2id Welfare, Washingto)t, agents. Ca 11 @ 68-66, 1961. 15 r Registry Alistract For, STATE C I TY LL, OF ISSI( CL VATE NPRIV osis Diagnos S CLINICAL OTHER(SPECIFY) -cn -AUTOPSY E) HISTOLOGY X.RAY 0 D agnosts CD ATIVE CYT GY REMOTI NOT ABL E UNSP EC I F I ED AS@AS IS C] AP Was case POS@ a H I and doctor o TREATMENT D NONE CtiEMOTH ER AP Y PATIENT REFUSES TREATMENT El OTHER (SPECIFY)C3 LYE] UNKNOWN El Purpose CUR PALLIATIVE DIAGNOSIS 0 Condition a scharge ALIVE DEAD AUTOPSY: YES NOE] NOT STATED El NOT FREE UNKNOWN Cl 0 CLINICAL EVIDENCE OF CANCER F-- -if Alive OF C ANCER C) r follow-up sician responi Name of pers, his repor of Institution to be inserted when Name . in a m is used Central Cancer Registry, 16 FOLLOW-UP INFORMATION SURIL SDURCE NO EVI- EVI- STATUS SUBSEQUENT TREATMENT VIV LOCAL 14ETA UN- DEAD OF ALI VE DENCE DENCE RECUR- STASI- OR REMARKS DATE TIME CON- OF OF RENCE S KNOVM MONTHS TACT CANCER CANCER CAUSE OF DEATH AUTOPSY YES rl NO NOT STATED Cl DATE OF DEATH SOURCE OF INFORMATION Front of the Cancer Registry Abstract Form is shown on page 16. Above is reverse side of the form. 17 TREATMENT DIRECTED AT CANCER OR METASTASES dures or ther- restricted to any and all proce Treatment is during or after the first clinical apies, administered ontrol, remove. diagnosis of cancerswhich usually modify, c .C, re- e whether primar.y or metastati dless or destroy cancer tissu lar patient, and regar ardless of response in a particu . clude 9 reatment does not in whether curative or palliative. T Lagnostic, symp- r therapies which are purely d' procedures 0 3,5 tomatic, or supportive, SURGICAL ATT@CK R E ON CANCER (Examp e@s etatron "' -""--tins en 'in gin' ectomy., @,balt Bomb, Mo-t-p@r g @ g 1 ly.phade- includi e i@na. @inear Accelerator nectomies (cervical, axillary, L groin para-aortic, and pel- Neutron Beam vic l'ymph no.de and radical X-Ray adi,,ctive 'so- ections). See lior- internal ,se of 'r orallY, in- neck diss opes wheth r given ,ones and Supportive below. t' , r by intravenous tracavitarity Cautery injection. Cr otherapy ts, moulds. seeds, Elyectrocoagulat]Lon skin All implan licators O'f radio- bladder and app Fuiguration (for eedles, a .al - such as, radium, cancers) ion (with comp lete active m teri e gold, etc. Local excis e or radon, radioactiv rem?val of cancer tissu e xcisional biopsy). n (TUB) Transurethral 'resect,.o r tissue ,ith removal of cance HORMO pounds Adren Cortisone ace ate (Examp e@s acetate ting Agents Hydrocortisone en) Prednisone (Meticort drenocorticotropic Hormone A (ACTH) (Leukeran Androgen Cyclophosphamide Testosterone propionate 'n) Cytoxan) (Halotest, (Endoxan, Fluoxymesterone Triethylene Melamine Estrogen rol (TEM) Diethylstilbest (Estinyl) (TSPA, ThioTEPA) estradiol (Busulfan, Myleran) Ethinyl Antimetabolites Progesterone rogesterone caproate (Amethopterin, Methotrexate) Hydroxyp in ,) (Amin6pterin) (Delalut forbormonal Effect, other TherapY ive operations 6-Mercaptopurine including ablat d is Purinethol) I (6-MP, and when the endocrine glan 6-Thioguanlne not the primary ite or sites ot (6-TG) metastases (examples) 5-Fluorouracil AdrenalectomY,,IM.st site. (5-FU) HypophyseCtOTny, for cancer of Miscellaneous Drugs oophorectomy Actinomycin D the breast cancer of Demecolcin OrchidectomY for 0, p,'DDD the prostate Potassium arsenite X-Ray "sterilization" (to the (Fowler's solution) gonads) Urethane 18 TREATMENT DIRECTED AT CANCER OR METASTASES, CONTINUED PROCEDURES NOT USUALLY TO BE CONSIDERED . AS CANCER-DIRECTED THERAPY. DIAGNOSTIC OR EXPLORATORY PROCEDURES All Diagnostic and Exploratory Surgery (Exa@ples) Laparotomy Thoracotomy Biopsies, if only part of the tumor is removed Blood smears D and C for Uterine Cancer (Dilatation and Curettage) Diagnostic X-ray Exfoliative Cytology Procedures ending in"oscopy"such as Bronchoscopy Laryngoscopy Cystoscopy (only) Sigmoidoscopy Gastroscopy Ventriculography Removal of lymph node SUPPORTIVE AND SYMPTOMATIC PROCEDURES Definitions: Supportive: Procedures designedto sustain strength of patient. Symptomatic: Procedures designed to alleviate symptoms, but not to cure. Blood Transfusion (for any reason) Catheterization Nerve section for pain Paracentesis -Thoracentesis (Removal of Fluid) Pain Relief Drugs Plastic Surgery Surgery which only short-circuits the neoplasm without removing tumor tissue, for example: Some Anastomoses Colostomy Cecostomy Uretero-sigmoid transplants Other operations ending in "otomy" or "ostomy", for example-. co rdotomy (Chordotomy) Phlebotomy (for Polycythemia Vera) Craniotomy Splenectomy (sometimes) Gastrostomy Ureterostomy Ileostomy Vasectomy (only for tumors of Leucotomy (Leukotomy) Bladder, Prostate, Nephrostomy Testis) Vcntriculostomy 19 FILING CANCER REGISTRY ABSTRACTS It is suggested that registries with few casesin each site category, file their abstracts according to major sites and site groups. Below are the major sites and site groups and their site classification numbers according to the International Statistical Classification of Diseases, Injuries and Causes of Death (Volume 1, World Health Organization, 1955 Revi- sion): Buccal cavity and pharynx (140-148) Stomach (151) Large Intestine, except rectum (153) Rectum (154) All other digestive organs (150,152,155-159) Lung (162) All other respiratory system (160,161,163-165) Breast (170) Cervix uteri (171) Corpus uteri (172) All other female genital organs (173-176) Prostate (177) All other male genital organs (178,179) Kidney and bladder (180,181) Skin (except melanoma) (191) All other sites (190,192-198) Unspecified sites and generalized carcinomas (199) Leukemia and aleukemia (204) All other lymphatic and hematopoletic tissues (200-203,205) 20 PATIENT INDEX CARD NAME HOSP.NO. ADDRESS REG. NO. RACE BIRTH DATE SEX DI AGNOS IS DATE OF DIAGNOSIS REFERRED BY CAUSE OF DEATH AND DATE FOLLOW-UP CONTROL CARD NAME: REG. NO. ADDRESS: SITE: DATE DIAGNOSED: DATE OF L TYPE OF REMARKS FOLLOW-[ TOR FOLLOW-UP 21 HOSPITAL LETTTRHEAD (Name of Patient) (Hospital patient number) Re: (Diagnosis of patient) Pt. DX: Date of Admission: Date Dear Doctor An annual follow-up of registered cancer cases seen in (name of hospital) since (year) is conducted by the Cancer Registry of this hospital. This is a basic part of our cancer program to meet the requirements of the American College of Surgeons. Please record below the latest information you have on the patient listed. If you have seen the patient within the past year, we ask only that you record the last in- formation in your office records. Sincerely, Chairman, Committee on Cancer 1. ALIVE: DATE YOU LAST HEARD FROM THE PATIENT DID YOU EXAMINE THE PATIENT FOR THE ABOVE NEOPLASM? STATUS OF THE PATIENT AT THAT TIME: (CHECK ONE) FREE OF THE NEOPLASM El NOT FREE OF THE NEOPLASM 2. DEAD: DATE OF DEATH PLACE OF DEATH 3. MOVED AWAY: DATE NEW ADDRESS 4. REFERRED TO ANOTHER PHYSICIAN: NAME AND ADDRESS ------------------------------------------------------- IF YOU ARE UNABLE TO COMPLETE NUMBERS 1 OR 2, MAY WE HAVE YOUR SIGNATURE TO THE AUTIFORIZATION BELOW: Since I am unable to secure a follow-up report for the current year regarding the present status of the above- named patient, you are hereby authorized by me to use any ethical means to obtain this information for your records. Signature 22 HOSPITAL LETTERHEAD Date Name Out-of-State Health Office Street Address City, State Dear Sir: We have recently learned of the death of the patient listed below. In order that our follow-up may be com- plete, would you kindly send us a copy of the death certificate, or fill in date of death and cause of death, below. We appreciate your cooperation in making our Tumor Reg- istry of value. Sincerely yours, Chairman, Committee on Cancer ------------------------------------------------------- NAME DIAGNOSIS LAST KNOWN ADDRESS DATE OF LATEST INFORMATION DATE OF BIRTH RACE SEX MARITAL STATUS SPOUSE'S NAME MOTHER'S MAIDEN FATHER'S NAME NAME PATIENT'S OCCUPATION CAUSE OF DEATH DATE OF DEATH 23 HOSPITAL LETTERHEAD Date Name of Patient Street Address City, State Dear We are writing to find out how you have been feeling since you were last seen in this hospital. Would you be kind enough to give us a brief report of your condition in the space below and return this letter to us in the enclosed envelope. Thank you very much for your cooperation. Sincerely yours, M.D. Enclosure ------------------------------------------------------- 1. DATE 2. HAVE YOU RECOVERED FROM THE COND I T I ON FOR WH I CH YOU WERE IN TH I S HOSPITAL? YES 0 NO 3. HAVE YOU HAD ANY FURTHER TREATMENT FOR THIS CONDITION? YES NO IF YES,,BY WHOM AND WHERE? NAME OF PHYSICIAN PHYSICIAN'S ADDRESS CITY STATE 4. NEW ADDRESS, IF YOU HAVE MOVED I 24 HOSPITAL LETTERHEAD Date Name of Relative or Other Informant Street Address City, State Dear The (name of hospital) is doing a special study of a number of our former patients. We are interested in the present condition of (name of patient) and have been unable to contact (him). Would you be kind enough to fill out the requested in- formation in the form below and return this letter to us. We are especially interested in the whereabouts of (name of patient) so that we may keep in touch with (him) for purposes of our study. We are enclosing a stamped, self-addressed envelope for your convenience. Thank you for your cooperation. Sincerely yours, M.D. Enclosure ------------------------------------------------------- PRESENT WHEREABOUTS OF: (NAME OF PATIENT) STREET ADDRESS CITY STATE PRESENT CONDITION: APPARENTLY WELL El NOT WELL El PRIMARY SITE(S).' ISC NO(S). CASES DIAGNOSED FROM 19 TO 19 REGISTRY HOSPITAL AGE HISTOLOGICAL DIAG TYPE OF DATE LAST CANCER SUR- CASE CASE PATIENTIS NAME RACE SEX AT DATE OF 0 R OTH E INITIAL CONTACT STATUS VIVAL NUMBER NUMBER DX. DIAGNOSIS BASIS OF DI THERAPYI OR DEATH THIS IME CONTACT' MOS. T 0 T A L S I. THERAPY THAT AFFECTED THE CANCER: S-SURGERY. R-RADIATION. C-CHEMOTHERAOY. H-HORFAONES 1. W-WITH CANCER. WO-WITHOUT C.ANCER. U-CANCER STATUS UNKNOWN. DOC-DEATH FROM OTHER CAUSES (ADD CANCER STATUS) CANCER REGISTRY SUMMARY MALE CASES R: FEMALE CASES D FEMALE i METHOD OF IAGNOSIS osis CANCER MALE GENITAL OR D . I . - I REPORT OF CANCER SURVIVAL AND END RESULTS FOR CASES DIAGNOSED AND/OR TREATED AT THE HOSPITAL PRIMARY SITE OF CASES INCLUDED IN THIS REPORT CASES DIAGNOSED AND/OR TREATED DURING THE YEAR(S) SURVIVAL AND END RESULTS THROUGH THE YEAR(S) I - 1 2. 3. 4. 5. 6. 7. YEAR TOTALI NO. OF SURVIVAL AND END RESULTS CASES A. CASES DIAGNOSED AND/OR TREATED DURING THE YEAR(S) PATIENTS WITHOUT CANCER NOT AT LAST FOLLOW-UP FOLLOWED (OBIR EXAMINATION FOR FULL IB2.WITH CANCER AT PERIOD ILAST FOLLOW-UP OR COVERED BY IE XAMINAT 07ON THIS 3. COND:T UN. REPORT NOWN AT LAST OLLOW-UP OR IEXAMINATION I P,[L. SUM OF PAT'ENTS N 0T FOLLOWED FOR @F LL PERiob OF U T HIS REPORT C. PATIENTS CLINICALLY LIVING FOR (CFIREE OF CANCER FULL PER- IC2. NOT FREE OF IOD COV- ICANCER ERED BY IC3. STATUS WITH THIS REGARD TO CANCER REPORT )UNKNOWN C4. SUMOFPAT IENT S LIVI NG FORFULL PE. (R I OD OF TH I S REPORT D. PAT I ENTSI Di. a. DEATH FROM DEAD WI TH INI OTHER CAUSES, PERIOD CANCER PRESENT COVERED b. DEATH FROM BY THIS OTHER CAUSES, REPORT CANCER NOT PRESENT D2. DEATH DUE TO ICANCER [D-3. PRESENCE OF .ICANCER NOT DETER. MINED AT DEATH D4. SUM 0 F PAT I ENTS DEAD WITHIN PERIOD OF THIS REPORT E. PERCENTOFPATIENTSFOLLOWED FORFULLPERIODCOVERED,C4 + D4 A F. PER CENT OF PATIENTS SUR- VIVING FULL PERIOD COVERED BY THIS REPORT, C4 A - B4 28 YEAR REPORT OF CANCER SURVIVAL AND END RESULTS Hospital BY MAJOR SITE GR01JPS CASES DIAGNOSED IN @19- ALL MOUTH DIGES- RESPIRA- FEMALE MALE URINARY OTHER I LEUKEMIA SITES AND TIVE TORY GEN. GEN. SKIN UNSPEC. AND REPORT THROUGH 19- PHARYNX SYSTEM SYSTEM ORGANS ORGANS ORGANS SITES LYWHOMA A. TOTAL NUMBER EXPOSED TO RISK B. PATIENTS( Bi. WITHOUT CANCER NOT FOLLOWED FOR FULL PER- B2. WITH CANCER IOD COVERED )B3. CONDITION UNKNOWN BY THIS RE- PORT B4. TOTAL C. PATIENTS( Cl. WITHOUT CANCER LIVING FOR FULL PERIOD C2. WITH CANCER COVERED By C3. CONDITION UNKNOWN THIS REPORT C4. TOTAL D PATIENTS Di. a. DUE TO DIAD WITHIN OTHER CAUSES, PERIOD COV- CANCER ERED BY PRESENT b. DUE TO OTHER CAUSES, CANCER NOT PRESENT D2. DUE TO CANCER D3. CANCER PRESENCE UNDETERMINED D4. TOTAL E. PER-CENTOFPATIENTS FOLLOWED FOR FULL PER I OD CDVERED C4 + D4 A F. PERCENTOFPATIENTSSURVIVING FULL PER I OD COVERED C4 BY THIS REPORT A - B4 C* YEAR REPORT OF CANCER SURVIVAL AND END RESULTS BY SELECTED SITES Hospital. CASES DIAGNOSED IN 19- KIDNEY LEUKEMIA ERVIX PROSTATE & SI(i N & REPORT THROUGli 19 LADDER ALEUKEMIA A. TOTAL NUM13ER EXPOSED TO RISK Bl. wiTHOUT CANCER B2. wiTH CANCER B3. CONDITION UNKNOWN 4. TOTAL WITHOUT CANCER WITH CANCER CONDrriON UNKNOWN TOTAL a. uE To OTHER CAUSES, CANCER PRESENT b. DUE TO CAUSES, R NOT NCER ESENCE INED TOTAL E. PERCENTOFPATIENTSFOLLOWED FORFULLPERIODCOVERED C4 + D4 A F. PERCENTOFPATIENTSSURVIVING FULL PERIOD OOVEREB C4 BY THIS REPORT . W --B 4 1 1 YEAR REPORT OF CANCER SURVIVAL AND END RESULTS OF PATIENTS Hospital BY SEX, STAGE, INITIAL THERAPY AND AGE AT DIAGNOSIS CASES DIAGNOSED IN 19 - I REG. I SUR- I SU RGERY 1 45 Y RS 146 - 601 61 75 76 Y RS. TOTAL MALE FENALEILOCAL-IMETAS-1 GERY RADI P. 'IND. YRS. YRS. & OVER REPORT THROUGH 19- NO. IZED TASES ONLY I &ATI ON- ICA-( DX) AT DX) I (AT DX) DX A. TOTAL NUMBER EXPOSED TO RISK B PATIENTS (Bi. WITHOUT CANCER N;T FOLLOWED FOR FULL PER- B2. WITH CANCER IOD COVERED EB3. CONDITION UNKNOWN BY THIS RE- PORT. TOTAL C PATIENTS WITHOUT CANCER LIVING FOR FULL PERIOD C2. WITH CANCER COVERED BY )C3. CONDITION UNKNOWN THIS REPORT (C4. TOTAL D. PATIENTS DI. a. DUE TO DEAD W ITHIN OTHER CAUSES, PERIOD COV- CANCER ERED BY PRESENT THIS REPORT b. DUE TO OTHER CAUSES, CANCER NOT PRESENT D2. DUE TO CANCER D3. CANCER PRESENCE UNDETERMINED iD4. TOTAL E. PERCENTOFPATIENTSFOLLOWED FORFULLPER'IODCOVERED C4 + D4 A F. PERCENTOFPATIENTSSURVIVING C4 FULL PERIOD COVERED C4 BY THIS REPORT A - B4 Financial Aspects of a Hospital Cancer Registry Abraham Ringel, M.A. - The expenses involved in organizing a medical secretary. The higher salary and routinely operating a cancer regis- for such a person, as compared with try in a small-to-moderate-sized gen- that of a general secretary, will be eral hospital (under 400 beds), as out- more than compensated for in greater lined in the American College of Sur- efficiency in transcribing, completely geons' Manual For Cance?- Pi-ograms, and accurately, the pertinent data from is a subject of considerable importance the medical records. for hospital administrators and mem- The personnel time required to oper- bers of the medical staff, and one on ate a hospital cancer registry is not which there is a paucity of informa- only dependent upon the knowledge tion. This article is an attempt to re- and ability of the secretary, but also Ive some of their questions concern- the following variables: (1) the size of so ing the purely administrative costs the hospital and the volume of the can- and requirements of a registry. It will cer load; (2) the amount of detail re- not deal with the voluntary supervisory corded on the cancer registry abstract; and guidance responsibilities of the (3) the organization of the medical hospital's Committee on Cancer in the records department, and the avail- operation of a registry, or the profes- ability of all medical charts (inpatient sional requirements and cost of com- and outpatient) to the cancer registry prehensive analysis of registry data secretary; (4) the completeness and and special studies. The duties of the legibility of the medical record charts; Committee on Cancer have been out- (5) the availability of information lined in the College's Manual, and the from the pathology laboratory and the cost of analysis of registry data and department of radiology; and (6) the special studies will vary according to response for follow-up information. the different interests and needs of the In general, it is estimated that a medical staff. cancer registry secretary will require The major expense in the routine a maximum of one hour to register a operation of a hospital cancer registry new cancer patient, and an average of is for a secretary. Ideally, a cancer one-half hour per case, to obtain and registry secretary should have training record follow-up information. This is and knowledge comparable to that of a predicated on the assumptions that the medical secretary, with some aptitude conditions noted in variables three to for elementary statistical tabulations. six inclusive mentioned above are fa- However, in the absence of such a per- vorable. On the other hand, if the regis- son, a successful hospital cancer regis- try secretary must hunt for medical try may be operated by an alert general charts and/or for necessary informa- secretary with no more than a high tion lacking in the charts, and if she school education, provided she receives has to send several letters before ob- adequate training and has the close taining adequate follow-up ' informa- and continuing supervision and guid- tion, more time will have to be allowed. ance of the hospital's Committee on The accompanying table gives esti- Cancer. In general, the pay scale for a mates of the optimum and maximum medically knowledgeable cancer regis- number of actual work hours of secre- try secretary is comparable to that of tarial help required per week to carry 32 out the routine work involved in main- forms, or a total of $45. In greater taining a hospital cancer registry for quantities this cost will be much lower. 15 years, per 100 new cancer patients On the other hand, the purchase of annually. forms, and special cabinets to house It should be noted that these time them, from commercial sources will be estimates will permit the secretary to considerably higher. prepare routine tabulations and re- Since the cancer registry secretary ports of the registry data, at least an- must work in close consultation with nually. However, she will probably not the Committee on Cancer, it is impor- have time to answer inquiries and re- tant that her supervision be their re- quests for information, or to code the sponsibility. Also, it is desirable that data for data processing equipment if the cancer registry be located in a sepa- required. Provision must also be made rate room (or corner) so that the secre- for work-breaks, sickness, and vacation tary may work with a minimum of dis- time. As noted above, the time of traction. The area reserved for the physicians and other researchers to registry should be large enough to con- prepare analytical and special study tain a desk and chair, typewriter, four- reports evaluating the management of cancer in the hospital-the funda- Estimates of the Optimum and Maximum mental reason for the registry-will r Week of Secretarial @umber of Hours Pe Help Required for the Routine Operation not be dealt with here, since this will of'a H6spital Cancer Registry for 15 vary according to the professional re- Yeare Per 100 New Cancer sources, interests and needs of the Patients Annually2 medical staff. Optimum Maximum Ist Year 1.9 1.9 The American College of Surgeons 2nd Year 2.5 3.0 has made no specific requirements with 3rd Year 2.9 3.9 respect to the forms to be used in a 4th Year 3.3 4.7 hospital cancer registry. However, they 5th Year 3.7 5.4 have suggested the following: 6th Year 4.0 6.1 7th Year 4.3 6.6 1. An abstract or summary of the hos- 8th Year 4.6 7.2 pital medical chart of each primary 9th Year 4.8 7.7 site of cancer in every cancer pa- 110th Year 5.0 8.1 llth Year 5.3 8.6 tient. (See pages 16 and 17.) 12th Year 5.4 8.9 2. A patient index card to identify 13th Year 5.6 9.3 every patient in the registry. (See 14th Year 5.8 9.6 page 21.) 15th Year 5.9 9.9 NOTE: A hospital may com.pute its personnel 3. A follow-up control card to alert requirements by multip yi,, eith col- umn by one hundredth f t:r b.d the secretary to obtain up-to-date capaciti. For example, a 250 bed hos- ital Will require an average of 4.8 information concerning the pa- sours of secretarial help per week dur- tient's cancer. (See page 22.) ing the first year (1.9 X 2-.5 = 4.8), and 9 3 hours per week during the fifth 4. An accession register, usually kept y@ar (3.7 x 2.5 = 9.3). 'Based on survival experience, ?,epot-ted in the in a three-ring binder, in which the California Tiii)tor Rei7ist?-y Ifo)tograph "Can- cancer cases are recorded by year cer Registratio)t aiid Sii)-vival iii California." of registration or diagnosis. (See 2Thei-e is a gre(it deal of va)-iatio?i i)z the rela- tioiiship between the iiiiniber of beds aiid 7tew page 26.) cancer patie)its. in Califop-)iia, the caselbed ratio ranged front O.,3 in coit)ity hospitals to A generous estimate of the cost of 1.61 in private hospitals. These estii@iates a?,e reproducing, by photo-offset, the ab- based on a oi)e-to-oiie i-elatio)zship of new pa- tie?its annually a)?d the at-erage daily total stract form is $15 a thousand, and $10 bed capacity. a thousand for each of the other three I 33 drawer file cabinet(s) to house cancer of the costs of the routine operation of registry abstract forms, two-drawer a registry in the average general hos- cabinet(s) for the patient index and pital is for secretarial help. This ex- the follow-up control files, and a tele- pense, assuming the efficient organiza- phone. The hospital should also provide tion of the medical re--ords department basic reference books such as the Man- and the co-operation of the medical ual for Tumor Nomenclature and a staff, is not burdensome and can be ab- medical as well as an ordinary diction- sorbed by most hospitals. ary, a sturdy three-ring binder for the accession register, stationery and post- References age, and miscellaneous other secretar- 1. California Tumor Registry: Ca@icei- Registration ial supplies. and Survival in California. Berkeley: State of Cali- Other than the initial equipment and fornia Departnie?)t of Public Health, 1963. 4. Ame?-ican College of Surgeons: Manual for Can- overhead costs, more than 95 per cent cer Pi-og?-ams. Chicago, 1961. 34 Automatic Data Processing of Cancer Registry Information Abraham Ringet, M.A. The use of automatic data processing Columns 53 through 69 should reflect machines to expedite and facilitate the the very last date of follow-up of the pa- tabulation, follow-up, and analysis of tient and all of the cumulated informa- cancer registry data is not new. The tion concerning survival time (columns rental or purchase of these machines is 56-58), different types of subsequent costly, and the necessary personnel to treatment following initial therapy operate them require special training, (column 61), and, if desired, the total and are difficult to recruit. Therefore, number of hospital admissions (column their use in the average general hospi- 66) and hospital days (columns 67-69) tal is justified only af ter registries have for this primary cancer. accessioned several thousand cancer In general, once coded, the first 52 cases, (and are adding new cases at a columns need never be changed except minimum rate of about 300 annually), if the primary site, histological diag- and the equipment and personnel can nosis, or other items have to be cor- be used in conjunction with other medi- rected. All cases, new and old, should cal or administrative record-keeping always be coded completely through the procedures. end of the code sheet. The date of last The information entered on the can- contact (follow-up) of new cases should cer registry abstract form suggested be the date of discharge from the hos- by the American College of Surgeons pital, and the information that follows (see pages 16 and 17) may be tran- should reflect this date. Thereafter, the slated into a numerical code for a punch last date of contact of the patient, to- card system such as that shown on gether with all of the subsequent fol- pages 37-41.) Shown on page 42 is a low-up information, are to be coded at sample code sheet on which the coded least annually until the patient's death. information may be entered. This form The unassigned columns in the 80- may be duplicated to 81/2 by 11 inches column punch-card may be used for in size and filed in alphabetical order in codification of more specific informa- a standard file cabinet drawer. On the tion concerning the various sites of can- other hand, some registries code the cer for special studies, e.g., smoking initial identifying and diagnostic and history to study lung cancer, eating treatment information through the pa- habits to study cancer of the stomach, tient's first discharge from the hospital etc. (column 52) on the front of a 5- by After the abstracted information has 9-inch card, and the follow-up informa- been coded, a punch-card should be tion on the reverse side to facilitate made and filed in numerical order. After handling and filing. It will be noted that new follow-up information has been en- the information through column 52 tered on the abstract form and coded, identifies and describes the patient, and the code sheet should be matched with the initial dia nosis and treatment of the punch-card for the case, and both 9 the primary cancer through the pa- sent to the key-punch machine operator. t ient's first discharge from the hospital. The operator can then duplicate the ini- 35 tial information (columns 1 through identify and print out part of the fol- 52) and punch in the up-dated follow-up low-up form letters to go to physicians, information. The old punch card should to help in preparing survival and end then be destroyed, and the code sheet results statistics, and in other ways. and new punch card should be filed. Some registries also use duplicate decks After the patient dies, the last follow- of the punch-cards as their patient in- up information is to be coded and en- dex and follow-up control files. tered on a punch-card, and the code Needless to say, a method of process- sheet may be destroyed. ing cancer registry information with A deck of punch cards which reflect the aid of machines is not the only the collected up-dated information in answer for the proper analysis and use the cancer registry together with a of the wealth of information accumu- soiter-counter may be used to expedite lated in the hospital cancer registry. counts by site, sex, stage of the disease Unless the information so processed is at diagnosis, types of treatment, iden-. properly communicated to the entire tify patients who need to be followed, medical staff and is used to further im- etc. With a tabulator the cards may be prove care of cancer patients, the can- used to print out annual accession cer registry is not worth the time, ef- books by site and year of diagnosis, to fort, and resources expended on it. 36 GENERAL HOSPITAL CANCER REGISTRY CODE COLUMN ITEM AN6 CODE NOTE': Every column must have a numerical code number or X (only one) except columns 6-30 (if the name does not fill all of the columns provided. 1 -5 REGISTRY CASE NUMBER The registry number is the patient's permanent ident- ification number. Assign a registry number to each new cancerpatient in consecutive order starting with the last two digits of the year in which the patient is first accessioned, e.g., 63-001 to 63-329; 64-001 to 64-346; 65-001, etc. In coding the separate ab- stracts for patients with two or more primary cancers, each abstract should be identified with the same registry number assigned at the time the first prim- ary cancer was registered. 6 -30 NAME OF PATIENT Enter last name, first name, middle initial. (e.g., Jones, Mary C. ) If only the husband's name is given for a married woman, insert Mrs. after middle ini- tial. (e.g., Jones, George A., Mrs.) 31 NUMBER OF PRIMARY CANCER SITES FOR THIS PATIENT (Separate Code Sheet and Punch Card For Each Primary Site) 0 -One primary cancer site only If an additional primary site is reported, code thus: I -First primary cancer site 2 -Second primary cancer site 3 -Third, etc. NOTE: When a second primary site is reported for the same patient it is necessary to re-code the code sheet and re-punch this column on the punch-card indicating the first primary site. The 0 originally coded and punched to indicate only one primary must be changed to I to indicate that this is the first primary cancer site of a patient with more than one primary. Skin lesions of different types as coded according to the Manual for Tumor Nomenclature are to be considered as separ- ate primaries, e.g., basal cell carcinomas of the skin of the face and trunk, squamous cell carcinoma of the forehead, baso-squamous cell carcinoma of the skin of the nose. 32 RESIDENCE OF THE PATIENT 1 -Your city 2 -Elsewhere in your county 3 -Adjacent county 4 -Elsewhere in your state 5 -Out of state X -Unknown 37 COLUMN ITEM AND CODE 3 3-34 AGE AT TIME OF INITIAL DIAGNOSIS Record age of pa lent at tim t e of 'nitial diagnosis of this primary cancer. If originally diagnosed any- where else, code aae according to the date of initial diagnosis elsewhere. Record age directly. XX -Age unknown 35 SEX AND RACE 0 -White male 5 -Other female I -White female 6 -Male, race unknown 2 -Negro male 7 -Female, race unknown 3 -Negro female 8 -White, sex unknown 4 -Other male 9 -Negro, sex unknown 36 MARITAL STATUS 1 -Single 2 -Married 3 -Divorced, or Separated 4 -Widow, or Widower X -Unknown 37 TYPE OF ADMISSION 1 -Private or Semi-Private 2 -Clinic or Service X -Unknown 38-41 PRIMARY SITE Use code from "International Statistical Classifica- tion of Diseases Injuries, and Causes of Death." if no fourth digit is included in the International Site Code record X in column 41. 42-44 HISTOLOGICAL DIAGNOSIS Use code from "Manual of Tumor Nomenclature and Cod- 12 ing. XXX -No histological diagnosis 45 BASIS OF DIAGNOSIS I-Autopsy 2 -Microscopic Confirmation 3-Exfoliative Cytology (Pap smear, Sputum, etc. 4 -X-ray 5 -Clinical 6 -Other (Blood smear, Bone marrow) X -Unknown NOTE: If two or more types of diagnoses are indicated, give priority to the type with the lowest code number. (e.g., if both Nlicroscopic Confirmation and X-ray are indicated, code #2.) 38 COLUMN ITEM AND CODE 46 -48 DATE OF INITIAL DIAGNOSIS Code year directly in Column 46-47. (e.g., 1962 62) Code month directly in Column 48. 1 -January 7 -July 2 -February 8 -August 3 -March 9 -September 4 -April 0 -October 5 -May X -November 6 -June Y -December XXX -Date of Initial Diagnosis Unknown NOTE: If month of original diagnosis is unknown, code 7 in column .48. If the season is given, code as follows:' Winter -2; Spring-5; Summer -8; Fall -X. 49 WHERE DIAGNOSED INITIALLY BY ANY MEANS I -At this hospital 2 -At another hospital 3 -In a doctors office X -Unknown 50 STAGE AT INITIAL DIAGNOSIS 1 -Localized -No metastases (including carcinoma in situ) 2 -Regional metastatic involvement, or extension 3 -Remote or diffuse metastases X -Unknown, Unspecified or Not Applicable 51 TYPE OF INITIAL TREATMENT DIRECTED TO THIS CANCER 0 -None, treatment refused, or treatment not completed 1 -Surgery 2 -Radiation 4 -Chemotherapy, and/or Hormonal therapy 9 -Palliative and Supportive treatment. (Surgery without removing tumor tissue, e.g., Colostomy, Anastomeses, etc; Vasectomy for tumors of bladder, prostate, testis; Blood Transfusion; Catheteriza- tion; removal of fluid; pain relief drugs, etc. X -Unknown or not available. NOTE: If two or more types of treatment are indicated, code sum of appropriate code numbers. Do not add 9 to any other number. (e.g., Surgery and radiation = 3, sur- gery and chemotherapy = 5, radiation and hormones = 6, etc. ) Biopsies and other diagnostic procedures are not to be considered as therap),. 52 STATUS OF PATIENT WITH RESPECT TO THIS CANCER AT DISCHARGE FROM HOSPITAL 0 - Dead I -Alive -Free of this cancer 2 -Alive -Not free of this cancer 3 -Alive -Unknown as to presence of this cancer X -Unknown -Whether living or dead 39 COLUMN ITEM AND CODE 53 -55 DATE OF LAST CONTACT WITH PATIENT Same code as Columns 46 -48 56 -58 SURVIVAL TIME FROM DATE OF INITIAL DIAGNOSIS (Cols. 46 -48) Code survival time in months directly, (e.g.) 31 months = 031, etc. (14 days or less = 0 months; 15 days to 44 days = I month; etc.) 59 SOURCE OF FOLLOW-UP I -Hospital Admission 2 -Attending Physician 3 -Outpatient Visits (clinic, X-ray therapy, etc.) 4 -Visiting Nurse 5 -Vital Statistics Death List -State Bureau of Vital Statistics 6 -Autopsy 7 -Personal Contact, Letters, Phone calls, etc. 8 -Other sources X -Unknown 60 PRESENT STATUS OF -PATIENT WITH RESPECT TO THIS CANCER 0 -Dead -No evidence of this cancer 1 -Dead -With this cancer 2 -Dead- Status of this cancer unknown 3 -Dead -Local recurrence of this cancer 4 -Dead- Metastases from this cancer 5 -Alive -No evidence of this cancer 6 -Alive -With this cancer 7 -Alive -Status of this cancer unknown 8 -Alive- Local recurrence of this cancer 9 -Alive -Metastases from this cancer 61 ALL TREATMENT FOLLOWING INITIAL TREATMENT RELATING TO THIS CANCER ONLY (cumulated) 0 -None or check-up only I -Surgery 2 -Radiation 4 -Chemotherapy and/or Hormonal therapy 9 -Palliative and supportive treatment (see column 51) X -Unknown or Not Available NOTE: If two or more types of treatment are indicated, code the sum of the appropriate code numbers. Do not add 9 to any number. Biopsies and other diagnostic proced- ures are not to be considered as therapy. 40 COLUMN ITEM AND CODE 62 -65 CAUSE OF DEATH 0000 -Patient Living Use code from "International Statistical Classifi- cation of Diseases, Injuries, and Causes of Death." If no fourth digit is included in the International Statistical Classification, code X in column 65. Note that the code for cause of death specified by the physician as "unknown" is 795-5. Code XXXX if information as to causeof death cannot be obtained.. 66 CUMULATED TOTAL NUMBER OF HOSPITAL ADMISSIONS F01i THIS CANCER ONLY Determine the total number of times this patient was ever admitted to any hospital for this cancer, and code directly. 0 -None 1 -One admission 2 -Two admissions 3 -Etc. 9 -Nine or more admissions X -Unknown, or not available 67 -69 CUMULATED TOTAL NUMBER OF HOSPITAL DAYS FOR THIS CANCER ONLY Determine the total numberof days this patient ever spent in all hospitals because of this cancer, and code directly. For example: 000 -None 001 -One day 050 -Fifty days 129 -One hundred twenty-nine days 999 -Nine hundred ninety-nine or more days XXX -Unknown, or not available 70 -80 AVAILABLE FOR SPECIAL STUDIES 41 GENERAL HOSPITAL. Cancer Registry Code Sheet REGI 'TRY CASE %'O. (COL. 1-5) COLUMN 6-30 NA@!E OF PATIENT COLUMN I T E N C2. E] COLUMN I T E N CODE 31 42-44 HISTOLOG 32 45 BASIS OF DIAGNOSIS 33-34 46-48 DATE OF INITIAL I 35 49 WHERE FIRST DIAGNOSED 36 MARITAL STATUS 50 STAGE AT I N I T I AL D I AGNOS I S 37 TYPE OF AMIISSION 51 TYPE OF INITIAL TREATMENT 52 _CONDITION AT DISCHARGE FOLLOW-UP DATA LIVING OR DATE AL TIME TOTAL SURVIV ;5 CAUSE OF DEATH @2 HOSPITAL DAYS LAST SEEK 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 42