The
HOSPITAL |
‘CANCER REGISTRY

Definition, Purpose, Value,
~@ Operation, and Cost

| Published by
f 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
Vol. 14, Nos. 4, 5, and 6, 1964; and Vol. 15, No. $, 1965.

This publication was made possible through contributions of the Ameri-
inst cancer. Publication of this material does

can public to the fight aga
not necessarily constitute endorsement by the American Cancer Society.

Copyright 1964, 1966, by American Cancer Society, Inc.
219 East 42nd Street, New York, N. Y. 10017
Table of Contents

B, Aubrey Schneider, Sc.D. (1912-1960)

The Tumor Registry—A Defimition 0.0 ccccsesssssuesssesseesseneeeee 1
John S. Spratt, Jr., M.D., F.A.CS.

The Purpose and Value of a Hospital Cancer
Registry 4
Abraham Ringel, M.A.

The Operation of a Hospital Cancer Registry ccccceccscmccsecsen 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.

 

 

 

iii
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, Sc.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
The Tumor Registry—
A Definition

John S. Spratt, Jr., M.D., F.A.C.S.

A tumor registry is a collection of
diagnostic, therapeutic and survival
data on patients with neoplastic dis-
eases. It is supplementary to the usual
diagnostic files of a hospital and is
necessary because of the chronicity and
complex ramifications of cancer as a
disease, The end product of good can-
cer therapy is added years of life, lived
comfortably and productively. Because
the history of a cancer, both before and
after treatment, may spread over many
years, it is necessary that the cancer
patient be kept under physician sur-
veillance for a longer period of time
than with other diseases. The tumor
registry is an aid to see that this is
done. The accumulation of biostatisti-
cal data from a tumor registry can
serve a variety of useful purposes and
these are summarized in Table 1.

Quality Control!

The first purpose of a registry listed
in Table 1 is quality control in the diag-
nosis and treatment of cancer. The first
component of quality contro! relates to
the sites and stages of cancers when
first seen, The consistent discovery and
treatment of cancer in advanced stages
may well imply that the patient-popula-
tion under consideration either does
not have access to, or is not utilizing
the existing cancer diagnostic facili-
ties for earlier diagnosis.

Registries are used most extensively
in studying the efficacy of treatment.
The first consideration is the treatment

Dr. Spratt is Chief Surgeon, Ellis Fischel State
Cancer Hospital, Columbia, Missouri.

 

rate or the percentage of patients re-
ceiving definitive therapy of different
types. The treatment rate is an index
of the temerity or aggressiveness of
cancer therapy within a particular in-
stitution and must always be con-
sidered in conjunction with the treat-
ment mortality rates. Optimally, the
treatment rate should be as high as
possible, commensurate with a low
treatment mortality rate. A low treat-
ment rate and a high treatment mor-
tality rate would indicate extremely
poor and inexperienced cancer therapy.
Between these two extremes exists a
broad spectrum of practices that varies
widely with the philosophy, training
and experience of various hospital
staffs. The optimum rates are the ones
associated with the best end results for
all cancer patients and not just the
“treated” or “determinant” cases.
Another economically important con-
sideration in the assessment of the
quality of treatment is, of course, mor-
bidity, as expressed by the total pe-
riod of time a patient is incapacitated
by treatment. For example, are two
months of hospitalization required due
to delay in recovery or rehabilitation,
when two weeks should be adequate?
The last, and most widely used, qual-
ity control in the treatment of cancer
is the end results. Conventionally, the
five-year survival rate has been the in-..
dex for comparison. Some cancers, but
not all, have shown their lethality by
the end of the fifth post-treatment
year. The wider usage of the life table

1

 
 

Table 1
PURPOSE OF A_TUMOR REGISTRY

1. Quality Control in Diagnosis and Treatment

Report on sites and stages.
Treatment:

1, Rates

2. Martality

3. Morbidity
End results.

2. Follow-Up

Detection of treatable disease:

1, Local recurrences

2. Regional metastases

3, Isolated remote metastases

4. New neoplasms
Palliation of untreatable cancers.
Accumulation of time-mortality data for
the assay of end results.

3.. Education

Feedback of quality contro! data to hos-
pital staff with comparisons to other
institutions.

Resident and undergraduate student
training in natural history and treat-
ment of cancer.

4, Research

Case location .

Clinical-pathological-mortality
correlations

Epidemiology

 

Other

 

 

method for calculating cumulative sur-
vival rates insures a more complete
use of the available data.

There are a number of statistical
methods for ascertaining whether sig-
nificant differences in end results asso-
ciated with various forms of treatment,
sites and stages exist. The end results
should also be compared in different
periods of time to ascertain whether
there is continued improvement or re-
gression in the quality and effective-
ness of treatment. When the end results
from two different populations are com-
‘pared, subtle variations in population
characteristics require careful statis-
tical scrutiny to eliminate the elements
of bias that would exclude comparable-
ness. Sometimes, these subtle differ-
ences can be studied only by carefully
planned and randomized prospective
studies which insure the similarity of
the populations receiving alternate
therapies. A good and permanent regis-

2

try is essential to the completion of
such studies.

Follow-up

The second major purpose of a tu-
mor registry is to insure that syste-
matic follow-up is carried out. Follow-
up is an expensive and time consuming
undertaking, both for the patient and
the physician. Consequently, it has to
be looked at objectively to make certain
that the patient derives the maximum
possible benefits from his participa-
tion, and that the physician’s time is
not consumed by unnecessary patient
visits. Consequently, the follow-up
schedule must conform to the natural
history of each type of neoplasm. In
this way, there is early detection of
local recurrence, regional metastases,
isolated remote metastases, and non-
simultaneous additional primary can-
cers which may be treated effectively.
Through the follow-up, the physician
should also become aware when the un-
cured patient gets into difficulty from
the progression of his cancer and will
require some of the various forms of
humane palliation available. The fol-
low-up system is essential to the con-
tinued accumulation of time-mortality
data for the assay of end results.

Education
Feedback to a hospital staff of infor-
mation derived from a registry insures
the continuing education of the hos-

- pital staff in the diagnosis of cancer;

in the appreciation of cancer as a major
medical problem, and in the quality of
care within their institution. In resi-
dent medical education, the registry
can be an important tool for teaching
the significance of a chronic disease as
a biological continuum, spreading over
many years of life. There is a tendency
in our general hospitals, predominantly

‘oriented toward acute care, to fail to

create an educational environment
whereby the student and resident be-
come aware of the chronicity of some
human diseases. Residents in surgery
and radiotherapy, in particular, are
sometimes so preoccupied with the im-
mediacy of an operative procedure or
therapeutic plan that they fail to look
into the past history of the patients, to
find out why the patient was so long in
coming for treatment, or into the future
of the disease process. The trainee
should realize that the uncured patient

may spend several years dying from a ~

painful and debilitating disease which
may exhaust his financial resources,
and ostracize him from both friend and
family—finally, he dies a rather lonely
death. The trainee should also appre-
ciate that the cured patient may de-
velop late complications as a by-product
of primary treatment.

Research

Lastly, the registry is a working in-
dex of biostatistical data, continually
available for clinical research by the
medical staff. The registry facilitates
the location of cases, the determination
of clinical pathological and mortality
correlations, and if sufficiently com-
plete, can be used for epidemiological
studies. The other clinical research
uses of the registry are limited only by
the range of imagination and insight
of an individual investigator.

The elements necessary for the oper-
ation of an efficient tumor registry are
listed in Table 2. First, the nomencla-
ture and staging have to be simple, and
the entire body of data recorded in the
registry should have a numerical cod-
ing system adaptable to automatic data
processing. Only when this is done is it
easy to calculate the reports necessary
for quality control and to feed them
back to the hospital staff. Such a sys-
tem also facilitates information-recall
for various other purposes which the
staff may require. Both the patient and
the physician have to understand the
need for the registry and be willing to
cooperate in its function. Every patient

 

Table 2

ELEMENTS NECESSARY FOR EFFICIENT
OPERATION OF A TUMOR REGISTRY

1. Simplicity in nomenclature with numeri-
cal coding of all basic data.

2. A plan for insuring that numerical coding
makes data adaptable to:
The easy calculation of the reports
necessary for quality control.
Information recall.

3. Indoctrination of patient and physician to
cooperative participation.

4. Systematic follow-up:
Numerous systems assuring peri-
odic contact.
Schedule for contacts should con-
form to natural histories of different
cancers.

5, Cooperation of State Bureau of Vital
Statistics.

 

 

 

with a neoplastic disease needs to be
indoctrinated in the chronicity of his
problem and the importance of main-
taining contact with his physician and,
through his physician, with the tumor
registry. Also, the complete coopera-
tion of the State Bureau of Vital Sta-
tistics is essential for the accumulation
of accurate mortality data.

Summary

A tumor registry is a working index
of cancer cases used to study the nat-
ural history of neoplastic diseases in
man. The data from a registry are used
to prove that cancer is prevented, cured
or palliated by various therapeutic
practices. The registry, to have valid
time-mortality data, and to insure that
the cancer patient is re-examined at
proper intervals, must have a link to
the patient through a clinic system or
through the offices of physicians. Many
registries, for want of a purpose, be-
come static repositories of unused data.
The function of registries should be
scrutinized to determine if the effort in- —
volved in maintaining the registry leads
to better understanding of cancer as a
disease, and to better care and treat-
ment of cancer patients in the hospital
undertaking the operation of a registry.

3
The Purpose and
Value of a Hospital
Cancer Registry —

Abraham Ringel, M.A.

Purpose

There is a considerable variation in
the quality of cancer care in the
United States today. The Cancer Reg-
istry Program of the American College
of Surgeons, and the support that is
given to it by the American Cancer
Society, reflect an attempt to raise it to
its highest possible level, Both organi-
zations believe that one of the basic
elements of sound cancer control is an
effective mechanism for measuring the
quality of cancer diagnosis and treat-

‘ment in an institution, i.e., a Hospital

Cancer Registry, as described in the
College’s Manual for Cancer Programs.
In furthering a Cancer Registry Pro-
gram, it is important to recognize the
purposes and problems connected with
it, and to differentiate the points of
view that obscure its primary objective.

In general, there are three types of
cancer registries in the United States.
The first type may be described as Spe-
cial Purpose Registries. These are lim-
ited in scope and are focused on one
form or aspect of cancer: bone tumor
registries, oral registries, pediatric
tumor registries, tissue and slide reg-
istries, are examples. They serve a very
useful purpose, but their primary func-
tion is education and reference.

The second type of registry, the
Epidemiological Registry, obtains in-

 

Mr. Ringel was formerly Consultant for Hos-
pital Cancer Registries for the American Cancer
Society.

4

 

formation about the prevalence and ‘in-
cidence of various sites and types of
cancer, as well as other research in-
formation which can only be obtained
from a large volume of data. There is
no need for a great number of such
registries—a selected number, strate-
gically located in the United States
where the volume of cancer is signifi-
cantly large, is adequate for most pur-
poses. Furthermore, the cost of operat-
ing and maintaining an Epidemio-
logical Registry, assuming qualified
personnel are available, is usually more
than most hospitals and communities
can afford.

The foregoing types of registries are
either limited in nature or have special
purposes extraneous to the primary ob-
jective of the American College of
Surgeon’s Hospital Cancer Registry
Program. The College recommends the
third type of registry—the Hospital
Evaluatory Cancer Registry, and the
American Cancer Society participates
in the support of this program. This
type of registry measures the quantity

-and quality of medical care provided

for cancer patients at a given institu-
tion, It has been described as the “mir-
ror” which can reflect to the hospital
staff how well it is diagnosing and
treating cancer in its hospital. As such,
a Cancer Registry is a medical program
which must be developed in response to
physician interest and function under
medical supervision and guidance, Its
results should be used by the hospital
medical staff in evaluating procedures
and in promoting possible improve-
ments. A registry, conceived and or-
ganized without physicians’ interest,
guidance and control, will result in a
useless expenditure of time and money.
On. the other hand, a program estab-
lished under proper auspices, with phy-
sician interest and participation, will
be an effective tool for measuring the
progress of cancer control in the hospi-
tal, and will provide a major stimulus
to that control.

The American College of Surgeons
has indicated that the minimum con-
tent of a Hospital Evaluatory Cancer
Registry is: (1) the name and address
of every hospital patient, private and
public, inpatient or outpatient, who
enters the hospital for diagnosis and/or
treatment of cancer; (2) adequate
identifying and diagnostic informa-
tion; (3) a basic abstract of the clini-
cal record; and (4) an annual follow-up
note for as long as the patient remains
alive. From this base, the content can
be elaborated as far as those conduct-
ing the registry desire. For such a
registry to be effective, 100 per cent of
the hospital’s cancer experience, includ-
ing cases diagnosed without histo-
pathological proof, must be recorded.

Information obtained from a regis-
try of this kind is primarily for the
consideration of the professional staff
of a hospital, Data show how the staff
is doing in the diagnosis and treatment
of cancer and are not for pure statisti-
cal compilation, For this reason, mini-
mum. standards of statistical accuracy
and clarity must be maintained. When
fully evaluated by a responsible medical
staff, this information can form a basis
of support for whatever action might
be necessary to improve the end results
in a given procedure.

In order to encourage the evaluation
of the data in the individual hospital
registries, the American College of

Surgeons has made it a requirement
for approval that an annual Report of
Survival and End Results be presented
to the medical staff. The medical staff
may then compare its statistics with
published data of the National Cancer
Institute, and with such publications as
the Cancer Prognosis Manual of Dr.
Arthur G. James of the Ohio State Uni-
versity Medical Center, and at local and
state medical society meetings.

Value

The value of a hospital cancer regis-
try varies in direct proportion to its
proper organization and use.

In initiating and promoting the indi-
vidual hospital cancer registry pro-
gram, the American College of Sur-
geons recognized this fact and has out-
lined both the necessary organizational
structure and the informational re-
ports that could be derived from a prop-
erly organized and active registry.
Thus, in listing its “Minimum Stand-
ards for Approval of Cancer Pro-
grams” in general hospitals, the Col-
lege notes two pre-conditions that must
be met before a hospital cancer registry
can function properly and meet its re-
quirements for approval:

1. “Hospitals must be accredited by
the Joint Commission on Accredi-
tation of Hospitals ....

2. “There shall be a committee on can-
cer of the medical staff, consisting
of physicians directly concerned
with the conduct of the cancer pro-
gram.”

In amplification of the second pre-
condition, the College states that “this
committee should be a standing com-
mittee of the professional staff. Mem- -
bers named by the medical staff should
be confirmed by the governing board
of the hospital, and should include rep-
resentatives from the departments of
surgery, internal medicine, radiology,
and pathology. In some hospitals it may
also serve as the tumor board.”
An individual hospital cancer regis-
try is worthless without the approval
and involvement of the medical staff.
This becomes apparent when we ex-
amine the structure of a registry, the
type and sources of the information to
be collected, and the uses that can be
made of this information. A hospital
cancer registry is “the repository of
records containing pertinent informa-
tion on diagnosis, treatment, follow-up,
and end results of all patients, private
and nonprivate, with a diagnosis of
cancer who have been admitted as in-
patients or to the outpatient depart-
ment of the hospital.” The summariza-
tion of this information for the regis-
try can only be obtained from the com-
pleted hospital medical chart, together
with supplementary information from
the departments of radiology and pa-
thology, and follow-up information
from attending physicians.

The College also notes that “if this
registry is to achieve its purposes, its
staff is required to record data on every
patient admitted with the diagnosis of
cancer, The data properly recorded in
the registry should make possible a
systematic follow-up of patients for an
annual report to the medical staff, in-
cluding an analysis of survival and end
results, as well as for special studies.
Such a report is essential to the assess-
ment of the care received by patients
with cancer.”

The components of an annual report
to the medical staff may consist of the
following information:

1. The total number of cancer cases
seen in the hospital during the
year.

2. The number of patients presenting
primary lesions versus those show-
ing recurrences.

3. The proportion of the total case
load for whom the original diag-
nosis was made at the institution
as compared. with those first diag-
nosed elsewhere.

4, The level of diagnosis (i.e., the pro-
portion of microscopically con-
firmed cases at the institution as
compared with other institutions).

5. Indication of improvement (or lack
of same) in the level of diagnosis
over the years.

6. The proportion of cases in which
the disease is localized or advanced
at the time of diagnosis, and
whether this situation is changing
with time.

7. The proportion of cases receiving
definitive versus palliative therapy.

8. The results of diagnosis and ther- |
apy in terms of survival rates.

The information that can be made
available to the medical staff in. the
hospital can be derived only if the
records are carefully kept and follow-up
scrupulously maintained, and the ac-
cumulated data properly and ade-
quately analyzed. Obviously, this infor-
mation can be of great value to the
physicians, and to local community
agencies. It provides the former with a
measure of the quantity and quality of
medical care given cancer patients,.and
to the latter, it furnishes a guide for
their public and professional education
programs, and other cancer control ac-
tivities. In addition, this information
can be a stimulus for intensive research
of specific diagnostic procedures and
therapeutic programs. One immediate
effect of the registry is that of greatly
improving the keeping of hospital rec-
ords as they relate to cancer, because of
greater interest among the attending
physicians, residents, and interns, and
the necessity for providing basic infor-
mation for the most effective analysis
of registry information.

Without the interest and guidance of
the medical staff, the registrar will
have difficulties and unresolved prob-
lems. One may encounter such -things
as “possible cancer” in the sign-out
diagnoses, and there will have to be
some “ground rules” for handling such

 
cases. How is the registrar going to ré-
solve any difficulties or inadequacies
that may be found with respect to the
hospital charts or record-keeping pro-
cedures if there is no committee on a
par with the record committee with
which to discuss such problems? How
is the registrar going to fit the physical
setup and the work of the registry
smoothly into existing hospital facili-
ties and procedures with a minimum of
disruption without someone in author-
ity working out agreements on the nec-
essary arrangements? How is one to
establish or maintain a successful fol-
low-up program if there is no gen-
eral agreement as to participation and
cooperation among the staff? Who will
bring such matters as follow-up to the
attention of the staff for discussion and
agreement if there is no committee or
chairman to carry out such responsibil-
ities? What sort of information would
the registrar dig out of the registry for

a report to the staff if there is no guid-

ance from a responsible chairman or

committee? And, even if the registrar
were able to prepare such a report, who
would present it to the staff?

It is for these and similar reasons
that the College lists the following
duties of the Committee on Cancer:

J. “To furnish leadership in the can-
cer control activities of the hospi-
tal, including the appointment of a
director of the cancer clinical pro-
gram,

2. “To confer with the administrator
relative to equipment, space, facili-
ties, and other administrative mat-
ters.

3. “To oversee the operation of the
cancer registry, with particular at-
tention directed to the follow-up
program, to the development of spe-
cial studies; and to survival and
end results reports.

4. “To advise and assist in the solu-
tion of problems involving relation-
ships between the cancer program

and the medical staff, or the ad-

ministrative departments of the

hospital.

5. “To maintain liaison with:

(a) “Other committees of the staff,
especially the tissue committee.

(b) “Cancer control activities of
the community, such as state
and local elements of the
American Cancer Society and
local and state departments of
health.

(c) “The Department of Profes-
sional Services of the Ameri-
can College of Surgeons and
the Committee on Cancer of
the College.

6. “To prepare the rules and regula-
tions needed for the operations of
the program and for incorporation
into the bylaws of the staff; and to
maintain adequate minutes of their
committee meetings.”

It cannot be emphasized sufficiently
that the key for the successful organ-
ization and operation of an individual
hospital cancer registry is the active
interest, cooperation, and participation
of the medical staff. Such participa-
tion can truly make the cancer registry
a “mirror” which reflects to the staff
what is good and what is bad with re-
spect to the diagnosis and treatment of
cancer in the institution. A registry
without such physician interest, guid-
ance, and control is a useless expendi-
ture of time and money.

References

1. American College of Surgeons: Manual for Can-
cer Programs, Chicago, 1961.

2. James, Arthur G.: Cancer Prognosis Manual.
New York: American Cancer Society, Inc., 1961.
Bibliography
Haenszel, W., and Hon. N. B.: Statistical ap-
proaches to the study of cancer with particular
reference to case registers. J. Chron. Dis. 4: 589-

599, 1956.

Schneider, 4.: The key to an effective hospital
cancer registry program. CA Bull. Cancer Prog. 10:
173-174, 1968.

Schneider, A.: Progress in cancer control through
cancer registries. Ca Bull, Cancer Prog. 8: 207-
210, 1958. :

U.S. Dept. of Health, Education, and Welfare:
Your Hospital Cancer Registry. Washington: U.S.
Govt, Print. Off., 1961.
The Operation of a Hospital Cancer Registry

Abraham Ringel, M.A.

Introduction

A hospital cancer registry should
contain the records of all patients with
cancer diagnosed by any means, includ-
ing those without microscopic confir-
mation. Patients diagnosed as having
“possible” or “probable” cancer, and
treated as if they have cancer (e.2.,
those diagnosed by clinical means only)
should be included in the registry for
evaluation and comparison with pa-
tients diagnosed more definitively. On
the other hand, patients diagnosed be-
fore the start of the registry should
not be included, uniess all patients
diagnosed in these years are also in-
cluded for valid comparisons between
the years.

The registry is the active file of per-
tinent information on the diagnosis,
treatment, follow-up and end results of
all cancer patients. What are the sources
of this information? What kinds of
files and records are to be kept? What
information on the diagnosis, treat-
ment, follow-up and end results are to
be collected? Finally, how may the in-
formation be summarized for presenta-
tion to the hospital medical staff?

Sources of Information

The completed hospital medical
charts comprise the primary source of
information for a hospital cancer regis-
try. In some hospitals, the medical rec-
ords librarian routinely sends the hos-
pital charts of all discharged cancer
patients to the registry secretary be-
fore they are filed. Elsewhere, the reg-
- istry secretary receives carbon copies
of the discharge sheets of cancer pa-
tients, or a list of their medical chart
numbers, which enables her to obtain

8

the medical charts.

A notation or anonymous stamp, such
as a star, is often affixed to the outside
cover of the medical chart to alert the
medical records librarian to the chart
of a cancer patient who returns as
either an inpatient or an outpatient.
To ensure complete coverage, lists and/
or reports of diagnoses made in the
pathology laboratory and in the radi-
ology department should be made avail-
able to the registry secretary. In hos-
pitals where outpatient charts are kept
apart from the inpatient charts, the
daily roster of visits should be avail-
able to the secretary. This insures the
registration of new patients, and the
recording of follow-up information on
patients previously registered.

Registry Files and the Accession
Register

The registry consists of: (1) a Site
File, containing clinical abstracts of all
registered cancer patients, with follow-
up notes for the lifetime of the pa-
tients; (2) a Patient Index File; and
(3) a Follow-up Control File. Many
hospitals employ a “three-in-one”’ file
of abstracts in strict alphabetical or-
der (the Master Patient Index File),
employing tabs to classify them by site
and time of follow-up. The registry
should also have an Accession Register,
which is a list of the cancer patients
initially admitted as inpatients or out-
patients to the hospital. This is a very
useful tool in the preparation of admin-
istrative and analytical reports.

The Cancer Registry Abstract

The file of cancer registry abstracts
is the most important element in all

 
cancer registry programs. These docu-
ments enable the medical staff to evalu-
ate the over-all cancer problem in the
institution. It is a concise summary of

significant facts from hospital medical .

charts on the history, diagnosis, and
treatment of every patient’s cancer. It
should not be a duplicate of details con-
cerning symptoms, diagnostic tech-
niques and particulars of therapeutic
procedures.

The abstract contains the minimum
information necessary for a registry.”
Additional information may be in-

cluded at the discretion of the Commit- .

tee on Cancer and the medical staff. If
the medical chart is complete and the
Committee on Cancer provides the nec-
essary guidance for the interpretation
of the medical information, a compe-
tent secretary can be trained in a few
weeks to do the abstracting.

A separate cancer registry abstract
form is prepared for each primary ana-
tomic site of cancer. (See pages 16 and
17.) Thus, a patient with two or more
primary cancer sites should have sepa-
rate abstracts for each primary cancer.
The only general exception to this rule
is cancer of the skin.

On June 16, 1964, the Executive Com-
mittee of the American College of Sur-
geons Committee on Cancer ruled “that
elimination of basal cell and squamous
cell carcinomas of the skin from the
registry does not impair the standing
of the registry in the approval pro-
gram of this College. Whether to in-
clude these cases may be left to the
judgment of the administration and the
staff of the individual institution.” On
the other hand, most hospitals which
register skin cancers, prepare separate
abstract forms for each type of cancer,
without regard to sites, i.e., one for all
basal cell, and another for all epider-
moid carcinomas. Thus, an early and
important decision to be made by the
hospital’s Committee on Cancer ‘Ys
whether or not to register cancers of

the skin to best serve the needs of the
medical staff.

How To Prepare the Cancer
Registry Abstract

As noted above, the primary source
of information for the registry is the
completed hospital medical chart. From
this, the abstract form should be filled
out as follows:

Name: Enter the family name first, .
followed by the first and second given
names. When the patient is a married
female, it is desirable to enter her given
name rather than her husband’s name
for more precise identification, i.e.,
“(Mrs.) Jones, Mary,” rather’ than
“(Mrs.) Jones, Walter.”

Name of Spouse: Enter the name and
address of the spouse, or close family or
other contact if the patient is unmar-
ried or is separated from the spouse.

Date of Admission: Enter the date
of first admission (inpatient or outpa-
tient) to the registering hospital for
the cancer for which the abstract is be-
ing prepared.

Date of Discharge: Enter the date of
discharge from the registering hospital
after the first admission.

Age or Birth Date: Enter the age at
admission to the registering hospital
or the date of birth. In most instances,
the age of the patient at admission to
the hospital and the age of the patient
at initial diagnosis of the cancer, will
be the same. However, when the age at
initial! diagnosis differs from the age
at admission, it should be noted (in red
ink or circled) to remind the secretary
to use the more significant age at initial
diagnosis in tabulations and analyses
by age. This distinction should be un-
derstood by everyone using the registry
data. (See page 11 for the definition of
the date of initial diagnosis.)

Race: Record whether the patient is

. White, Negro or Other, using the defi-

nitions of the United States Census
Bureau. The White race includes Puer-

9
to Ricans, other West Indians, Mexi-
cans, and Central and South Ameri-
cans; and “Other” includes all “Amer-
jean Indians” and those identified as
“Asiaties,” such as East Indians, Chi-
nese, Japanese, Korean, and so forth.
Persons of mixed parentage are classi-
ified according to the race of the non-
white parent; and mixtures of non-
whites are generally classified accord-
ing to the race of the father. In areas
where there is special interest in se-
lected population groups, such as Latin
Americans or Asiatics, appropriate en-
tries may be made.

Marital Status: Indicate whether the
patient is Single, Married, Widowed,
Divorced or Separated.

Hospital Status: Check the appropri-
ate boxes for Private or Nonprivate,
Inpatient or Outpatient for the pa-
tient’s hospital status at initial admis-
sion.

Registry No.: There are two common
and acceptable methods of numbering
patients in the registry. One method is
to number each new patient with the
next consecutive number indefinitely,
beginning with the number 1; another
is to start each new calendar year of
registration with number 1 and pre-
cede this with the last two digits of the
year of accession: for example, 63-1 to
68-260, 64-1 to 64-275, and so forth.
The only advantage of this latter meth-
od is that the number of cancer cases
aecessioned in the year is more readily
apparent. However, it must be remem-
bered that all of these cases were not
necessarily diagnosed during that same
year. It must be emphasized that @
cancer patient is identified by only one
assigned registry number no matter
how many primary cancers he may
. have.

Hospital and Hospital No.: In the
spaces provided, enter the name of the
hospital and the hospital medical chart
number for this patient at the time of
initial admission to the hospital.

10

Final Diagnosis: Enter only the pri-
mary anatomic site of origin of the
cancer. Metastatic sites need not be re-
corded. When the primary site of origin
of the malignancy is unknown, it should
be recorded as “Primary Unknown,”
even though the metastatic site is
known. In case of doubt, the registry
secretary should consult with the Can-
cer Committee.

Basis of Diagnosis: Indicate the one
or more methods used to make the diag-
nosis of cancer. Thus, if the cancer was
initially diagnosed by clinical means
and subsequently verified microscopi-

-cally, both methods should be noted.

The term “Histology” includes micro-
scopic diagnoses based on specimen
from biopsy, frozen section, surgery, or
D. & C.; also included, are positive
hematological findings relative to leu-
kemia, bone marrow specimen, and
diagnoses based upon paraffin block
specimens from concentrated spinal,
pleural, or peritoneal fluid. Diagnoses
based on “X-ray” findings are self-evi-
dent. The term “Clinical” refers to
cases diagnosed by exploratory surgery
without microscopic examination, by
endoscopy without positive histology,
and by other clinical methods, such as
palpation. “Other” bases of diagnosis
should be specified.

Exfoliative Cytology: Note the type
and whether the findings are negative
or positive. Exfoliative cytology is de-
fined as diagnoses based on microscopic
examination of cells as contrasted with
tissue. Included in this definition are
smears from sputum, bronchial wash-
ings, prostatic secretions, breast secre-
tions, gastric, spinal, peritoneal, or
pleural fluid, and urinary sediment,

“and, of course, cervical and vaginal

smears.

Histological Diagnosis: The diag-
nosis of cancer is noted essentially in
terms of anatomical site and histologi-
cal type. Although some doctors rou-
tinely use histological terms in phras-
ing the diagnosis, even in the absence
of microscopic evidence, this section of
the abstract form should contain only
the summary statement on the Pathol-
ogy Report, and be left blank in the
absence of such a report.

Date of Diagnosis: This refers to-

the date of the very first diagnosis of
this cancer by any recognized medical
practitioner, even when the diagnosis
was not proven microscopically, or was
confirmed much later by histology. In
other words, the date of the very first
diagnosis should be entered here re-
gardless of the method of diagnosis or
where it was made. The question is
often asked how a secretary can deter-
mine whether a patient was diagnosed
as having cancer in the absence of
microscopic confirmation: It is the con-
tention of many physicians, however,
that a clinical diagnosis of cancer has
been made if the patient is being
treated as if he had cancer. If subse-
quent histology disproves the clinical
diagnosis, the case is to be removed
from the registry.

Stage of Disease: One of the major
reasons for obtaining information con-
cerning stage of the disease is that it is
often the most important factor influ-
encing the doctor’s choice of therapy.
Thus, it would be most logical to obtain
the doctor’s appraisal of the extent of
the disease before treatment is begun.
_ Such information is usually not stated
explicitly and would require abstract-
ing of records by a physician. However,
it is feasible to collect information con-
cerning the stage of the disease at initi-
ation of first treatment as appraised at
a later time. Normally, the patient’s
medical record, when completed after
the first discharge, contains statements
and laboratory reports from which the
stage of the disease at initiation of
treatment can be derived. The stage of
the disease as reported on the abstract
form would, therefore, be an evaluation
of the stage of the disease at initiation

of the first cancer-directed therapy as
appraised at the end of the first course
of treatment, or after the first hospital
discharge. If the patient is untreated,
an evaluation of the stage of the dis-
ease at diagnosis should be recorded.
The stage of the disease to be recorded
is not defined as clinical staging; it is,
rather, an estimate of the stage of the
disease based on all of the evidence
available at the time of the first ther-
apy, including, in addition to the strict-
ly clinical impression, any evidence
derived from X-ray, surgery, pathol-
ogy, and so forth. It could be thought
of as a “corrected” clinical impres-
sion? If the stage of the disease is not
explicitly stated in the medical chart,
the cancer registry secretary should
consult her Cancer Committee. The
following brief definitions may be use-.
ful guides for staging malignancies:

1. Localized is the designation of a
cancer that is confined to the site of
origin, regardless of tumor size.

2. Regional Involvement denotes a
cancer which has passed the bounds
of the site of origin, but whose fur-
ther spread is thought to be limited
to neighboring organs or tissues, or
to regional lymph nodes.

3. Remote Metastases is defined as in-
volvement of organs or tissues be-
yond those immediately draining or
neighboring the site of origin of
the malignancy.*

History : Enter the date of the initial
diagnosis, and the date and type of
treatment in this section of the ab-
stract if the case has been diagnosed
and/or treated prior to admission to the
registering hospital. For these cases it
must be remembered that the date of
initial diagnosis is the date of the prior
diagnosis and not the date of diagnosis
at this hospital. (See preceding col-
umn, paragraph 2.) This information

‘ig generally available from the history

statement in the medical chart.
Treatment: This section of the can-

11
cer registry abstract form should con-
tain information on therapeutic pro-
cedures that were provided only during
the very first hospital admission of this
patient for this cancer only. Treatment
that was provided during subsequent
hospital admissions to the registering
hospital, as well as in other hospi-
tals, should be noted on the back
under “follow-up information.” How-
ever, when the initial plan of treatment
extends beyond the date of discharge
from the hospital, such as radiation
therapy, this should also be included in
this section of the abstract.

The End Results Program of the
National Cancer Institute defines treat-
ment as “any and all procedures or
therapies, administered during or after
the first clinical diagnosis of cancer,
which usually modify, control, remove,
or destroy proliferating cancer tissue,
whether primary or metastatic—re-
gardless of response in a particular
patient. Treatment does not include
procedures or therapies which are pure-
ly diagnostic, symptomatic, or suppor-
tive. Any therapy which is not con-
sidered cancer-directed or which does
not fall within the definition above is
to be classified as ‘no treatment’.’”
(See pages 18 and 19 for the more com-
mon therapies and procedures.) Thus,
it is suggested that only cancer-direct-
ed therapy (as defined above) should
be checked in the boxes provided. The
registry secretary should be encour-
aged to consult with the Cancer Com-
mittee concerning the therapies and
procedures to be recorded on the ab-
stract. However, it must be re-empha-
sized that the registry abstract should
not be a duplicate of the clinical details
in the medical chart.

Purpose: Indicate the one or more
objectives of the therapy and pro-
cedures provided the patient.

Condition and Follow-up: The com-
pletion of the final section on the front
of the cancer registry abstract form is

12

self-evident. Information concerning
the cancer status of the patient at dis-
charge, whether alive or dead, and if
dead, the date of death and cause of
death should be noted. If the cancer
status of the patient cannot be deter-
mined from the medical chart, the reg-
istry secretary should consult with the
Cancer Committee or record it as “Un-
known.” Finally, information concern-
ing the hospital or physician responsi-
ble for follow-up should be noted.
Follow-up Information: This should
be summarized on the back of the can-
cer registry abstract form. It is sug-
gested that the first line be completed
at the time the front of the cancer
registry abstract form is first com-
pleted in order to note the survival
time. Thus, the “date” to be entered
would be the date of discharge of the
patient from the hospital. “Survival
time in months” is to be computed from
the date of diagnosis to the date of dis-
charge. “Source of contact” would be
the hospital chart in this instance, and
the condition of the patient would be
the same as that noted on the front of
the abstract form. Thereafter, sum-
mary follow-up information relating to
this cancer, based on visits to the out-
patient department, admissions to the
hospital, letters to the referring physi-
cian, or other sources, should be noted.
In general, it is not necessary to post
follow-up information at intervals of
less than six months to a year, unless
there is significant information about
the patient’s cancer. If the patient has
undergone a long-range plan of ther-
apy, it is recommended that the begin-
ning date and the ending date of such
therapy be entered, that the survival
time be computed through the date
when last seen, and a summary state-
ment of the treatment be noted. The
abstract is not to be used as a running
summary or clinical record of what has
been done for the patient at each visit.
Finally, information concerning the
cause of death, and whether or not an
autopsy was performed, should be en-
tered at the bottom of the form. Obvi-
ously, the last date of follow-up is the
date of death, and the final survival
time should be computed from the date
of diagnosis to the date of death.

Filing Cancer Registry Abstracts

The abstracts of all patients, living
and dead, are usually filed by anatomic
site of cancer in alphabetical order,
thus automatically creating a useful
anatomic index. When the number of
registered cases warrant it, two such
files may be set up—one for the active
cases, and one for the dead cases. The
abstracts may be filed according to the
major site groupings of the Manual of
the International Statistical Classifica-
tion of Diseases, Injuries and Causes
of Death. (See page 20.) As noted
above, registries employing the “three-
in-one” file employ tabs to classify the
abstracts by anatomic sites.

The Patient Index File

The Patient Index File is a perma-
nent alphabetical index file, and may
consist of individual 3” x 5” cards for
every registered cancer patient, living
and dead, (See page 21, top.) It is the
master control file and enables the sec-
retary to avoid duplicate accessions in
the registry. It should contain such
identifying information as:

a. the patient’s full name and address

b. the hospital medical chart number

c. the patient’s assigned cancer reg-

istry number

d. the patient’s date of birth, sex, and

race

e.the cancer diagnosis (primary

site)

f. the date of initial diagnosis

g.the name and address of the re-

ferring physician

h. the (eventual) cause and date of

death
If a previously registered patient re-

turns to the hospital with another pri-
mary cancer, this cancer should also be
noted on his Patient Index Card.

The Follow-up Control File

Regular clinical follow-up examina-
tion of the cancer patient, to determine
the presence or absence of disease and
the need for further therapy, is essen-
tial in the proper management of the
disease. Consequently, a primary func-
tion of cancer registries is to help as-
sure and promote periodic follow-up
examinations, by maintaining a Fol-
low-up Control File of reminder cards
to be made out at the time of registra-
tion. The Follow-up Control Card
should contain the following informa-
tion (see page 21, bottom) :

a. the name and address of the pa-

tient

b. the assigned cancer registry num-

ber

c. the site of cancer

d. the date of diagnosis

e. the date when the patient was last

seen

f. the name of the attending physi-

cian.

These cards should be filed in alpha-
betical order by month of follow-up,
to alert the registrar to review the pa-
tient’s medical chart at regular inter-
vals (at least once a year), and post
follow-up information on the abstract
form, or communicate with the attend-
ing physician or others for follow-up
information.

Follow-up information in many in-
stances is obtained from readmission
or outpatient records (“automatic” fol-
low-up). The cancer registry secretary
should not ask for follow-up informa-
tion from the attending physician un-
less the follow-up period (usually a
year) has passed since the last contact
with the patient. If the patient is no
longer under the care of a physician,
the registry secretary should obtain his
permission to contact the patient or

13
patient’s family. If the patient has
moved, the postmaster may have a for-
warding address. The death registra-
tion files of state or local bureaus of
vital statistics will often be able to pro-
vide information about a deceased
patient, and may give the name of the
physician who signed the death certifi-
cate. Information about the patient
may also. be obtained from relatives,
the visiting nurses association, the city
directory, other hospitals, and other
social service agencies. (See pages 22
to 25 for sample follow-up letters.)
When follow-up reveals that the pa-
tient has died, the cause and date of
death should be entered on the Pa-
tient’s Index Card as well as on the
cancer registry abstract, and notifica-
tion should be sent to the medical rec-
ords librarian for entry in the hospital
chart. The Follow-up Control Card
should then be destroyed. The Follow-
up Control Cards remaining at the end
of a follow-up period represent patients
for whom no new information has been
received, i.e., those lost to follow-up.

The Accession Register

The Accession Register may be a
yearly listing of all patients, their diag-
nosis, and their assigned cancer regis-
try numbers from the date of the es-
tablishment of the registry. Patients
with multiple primary cancers will
have only one registry number. Such
patients may be identified with a dis-
tinctive notation, such as an asterisk,
or with a notation of the other site(s).

An alternate type of Accession Reg-
ister is designed to list registered pa-
tients by year of initial diagnosis of
the primary lesion, by major anatomic
sites or site groups. (See pages 26 and
20.) These lists enable the cancer reg-
istry secretary to prepare summary
reports of patients by anatomic sites,
and by race, sex, method of diagnosis,
stage and other categories (age at diag-
nosis, type of initial treatment, and

14

survival time) for the information of
the medical staff and the hospital ad-
ministrator. (See page 27.) They may
also be used to prepare reports of sur-
vival and end results by selected sites
and site groups. (See below.) How-
ever, it must be remembered that the
information relating to “Date Last
Contact” and “Cancer Status This Con-
tact” must be entered in pencil at each
follow-up until the death of the patient
so that it can be erased when the fol-
low-up information is up-dated. Sur-
vival time should be computed and
recorded only after the death of the
patient. When using this Accession
Register, the secretary must keep track
of the assigned cancer registry num-
bers on a separate pad or notebook.

Report of Survival and End Results

The cancer registry abstract with
current information will provide the
basic data for the preparation of Re-
ports of Survival and End Results to
the medical staff. (See page 28.) This
is one of the requirements for approval
by the American College of Surgeons.

It is suggested that initially the hos-
pital prepare a one-year report for
cases diagnosed during a recent year.
Thus, if a report is to be filled out for
the cancer cases diagnosed in 1962, it
would be necessary to obtain the cancer
registry abstracts for all cases diag-
nosed during that year and followed
for one year through 1963—the living
as well as those who died within the
year of diagnosis. The vertical columns
on the report form can be filled in ac-
cording to the groups of patients to be
reported upon, such as patients for
whom there is microscopic confirma-
tion, patients divided by sex, race, site
groups or individual sites of cancer,
stage of disease, age groups, and so
forth. The cancer registry abstracts
should then be divided into three
groups: (1) those patients for whom
follow-up information is not available
(not followed) for the full period cov-
ered by this report; (2) patients living
for the full period covered by this re-
port; and (3) patients who have died
within the period covered by this re-
port. Within each major group, the
abstracts should then be subdivided
into three additional subgroups—pa-
tients having evidence of cancer, no
evidence of cancer, and patients for
whom this information is not available.
The number of abstracts in each of the
three subgroups should be entered on
the form and totaled. The per cent of
patients followed during the period
E, and the per cent of patients who
survived during the full period covered
by this report, F, can then be com-
puted according to the formula on the
report form.

In subsequent years, when the medi-
cal staff desires a report of patients for
a two-year or three-year period, or
longer, the registrar can obtain the ab-
stracts of those patients who might
have survived two, three, or more
years. Thus, if a three-year survival
report is to be prepared in 1964, the
abstracts of patients diagnosed in 1959,
and 1960, and followed through 1962
and 1963, respectively, should be re-
moved from the files. Following the
same procedure as that outlined above,
that is, sorting the abstracts for each

year into three groups, and within
these groups into three subgroups, it
will then be possible to obtain the totals
of the various categories, and to com-
pute the follow-up and survival infor-
mation for the cases diagnosed in 1959
and 1960. The two three-year reports
can then be compared, and could be add-
ed together to obtain a cumulative
three-year follow-up and survival re-
port.

The preparation of summary reports
and reports of survival and end results
by specific sites or site groups is a rela-
tively simple matter for those regis-
tries using the alternate type of Acces-
sion Register. (See pages 26-28.) For
example, it is possible to prepare a five-
year report of survival for breast cases
diagnosed in 1958 and followed through
1963, by tabulating all of the necessary
information from the Accession Regis-
ter List. of breast cases diagnosed in
1958. Similar reports may be prepared
for any period of time by site groups,
specific sites, or other variables. (See
pages 29-31.)

A properly trained cancer registry
secretary should have little difficulty in
maintaining and operating a registry,
provided she has the continuing assist-
ance and guidance of a physician su-
pervisor and the cooperation of the
medical staff.

References

1. American College of Surgeons: Handbook for
Cuncer Registry Secretaries. Chicago, 1962.

2, American College of Surgeons: Manual for Can-
cer Programs. Chicago, 1961.

2. Manual of the Uniform Punch Card of the End
Results Program, CCNSC, National Cancer Insti-
tute, U.S. Public Health Service, Department of
Health, Education, and Welfare, Washington,

DC., January 1, 1959. (Unpublished.)

4. California Tumor Registry: A Guide for the
Tumor Registry Secretary in Recording Stage.
Berkeley: State of California Department of Pub-
lic Health, 1964.

5. Karnofsky, D. A.: Cancer chemotherapeutic
agents. Ca 11: 58-66, 1961.

15
|

  
   

Cancer Registry Abstract Form

 

 

NAME
KE REGISTRY NO.
Z |STREET
tu | ADDRESS CITY STATE
tz [name OF SPOUSE DATE OF DATE OF HOSPITAL
o ADM1SS1ON DISCHARGE
A SEX |MARIT SPITAL NO.
AGE OR BIRTH DATE} RACE x MARITAL private OJ ouTpaTient CJ HO
nonprivate [] INPATIENT Ch
FINAL DIAGNOSIS
(SPECIFY PRIMARY
SITE OF CANCER)
an Basis of Diagnosis
3g autopsy [) HistoLocy (] x-ray 1) cLinical () OTHER( SPECIFY) oO
3 Histological Diagnosis GRADE
| (PATHOLOGY REPORT)
Toate OF EXFOLILATIVE
DIAGNOSIS CYTOLOGY
Stage of - REGIONAL REMOTE NOT
Disease Locat#zeo C) INVOLVEMENT (] METASTASIS (] APPLICABLE CL] unspectFIeEot
Was case positively diagnosed
> las cancer before this admission? not) yes) _!F $0. DATE!
e hee pa been previously treated for this cancer? no() YES [) RECURRENCE a
on "Yes" speci fy date, type of treatment,
= and doctor or hospital NO EVIDENCE OF o1sease C)
DATE TREATMENT

 

 

|

CONDITION

Type surcery C) RADIATION (} CHEMOTHERAPY [] HORMONES CI none [) UNKNOWN Oo
OTHER cseeciFy) C)

PATIENT REFUSES TREATMENT CL]
unknown []

Purpose
curative C) PALLIATIVE CJ piacnosts only [}

Date and Type of Treatment

TREATMENT

 

 

 

Condition at Discharge acive O peao (J
If Dead, Date of Death |
Cause of Death autopsy: YEsSC) no[] NoT sTATED CJ
QO CLINICAL EVIDENCE NOT FREE
OF 0 OF CANCER 0 unknown C)

if Alive N
CANCER

 

FOLLOW-UP

Name and address of Hospital or Physician responsible for follow-up

 

 

 

 

 

 

Name of person submitting this report Date

Name of Institution to be inserted when
form is used in a Central Cancer Registry.

 

 

 

————— ee

16
FOLLOW-UP INFORMATION

SOURCE i-| EVI- -
DENCE LOCAL | y N SUBSEQUENT TREATMENT
MONTHS | TACT OR REMARKS

 

CAUSE OF DEATH autopsy ves (] no (nov stated CJ

SOURCE OF INFORMATION DATE OF DEATH

 

Front of the Cancer Registry Abstract Form is shown on page 16. Above is reverse side of the form.

17
 

TREATMENT DIRECTED

Treatment is restricted to

AT CANCER OR METASTASES

any and all procedures oF ther-

apies, administered during or after the first clinical
diagnosis of cancer, which usually modify, control, remove,
or destroy cancer tissue whether primary oF metastatic, re
gardless of response in a particular patient, and regardless

whether curative oF palliative. Treatment does not include
procedures oF therapies which are purely diagnostic, Symp-

tomatic, or supportive.’

SURGICAL ATTACK
ON CANCER (Examples)

Most operations ending in “ectomy.”
including regional lymphade-
nectomies (cervical, axillary,
groin, para-aortic, and pel-
vic lymph node and radical
neck dissections). See Hor-
mones and Supportive below.

Cautery

Cryotherapy

Electrocoagulation

Fulguration (for bladder and skin
cancers)

Local excision (with complete
removal of cancer tissue or
excisional biopsy)

Transurethral resection (TUR)
vith removal of cancer tissue

CHEMOTHERAPY (Examples)
Poly functional Alkylating Agents
(HN2 Mustargen)
Chlorambucil
(Leukeran)
Cyclophosphamide
(Endoxan, Cytoxan)
Triethylene Melamine
(TEM)
(TSPA, ThioTEPA)
(Busul fan, Myleran)
Antimetabolites
(Amethopterin, Methotrexate)
(Aminopterin
6-Mercaptopurine
(6-MP, Purinethol)
6-Thioguanine
(6-TG)
5-Fluorouracil
(5-FU) :
Miscellaneous Drugs
" Actinomycin
Demecolcin
o, p,’ DDD
Potassium arsenite
(Fowler's solution)
Urethane

18

RADIATION TO

CANCER TISSUE (Examples)
Betatron
Cobalt Bomb
Linear Accelerator
Neutron Beam
X-Ray
Internal use of radioactive iso-
topes whether given orally, in-
tracavitarily, oF by intravenous
injection.
All implants, moulds, seeds,
needles, applicators of radio-
active material —such as radium,
radon, radioactive gold, etc.

HORMONES (Examples)

Adrenal Cortical Compounds
Cortisone acetate
Hydrocortisone acetate
Prednisone (Meticorten)

Adrenocorticotropic Hormone
( ACTH)

Androgen
Testosterone propionate
Fluoxymesterone (Halotestin)

Estrogen
Diethylstilbestrol
Ethinyl estradiol (Estinyl)

Progesterone ‘
Hydroxyprogesterone caproate
(Delalutin)

Other Therapy for Hormonal Effect,

including ablative operations

and when the endocrine gland is
not the primary site or sites of
metastases (examples)
Adrenalectomy
Hypophysectomy
Oophorectomy
the breast
Orchidectomy for cancer of
the prostate
X-Ray “sterilization” (to the
gonads)

Most sites

for cancer of
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 (Examples)
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 designed to 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:

Cordotemy (Chordotomy) Phlebotomy (for Polycythemia Vera)

Craniotomy Splenectomy (sometimes)

Gastrostomy Ureterostomy

Tleostomy Vasectomy (only for tumors of

Leucotomy (Leukotomy ) Bladder, Prostate,

Nephrostomy Testis)

Ventriculostomy

19
It is suggested that registries with few cases in each site
category, file their abstracts according to major sites and

FILING CANCER REGISTRY ABSTRACTS

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):

20

Buccal cavity and pharynx
Stomach

Large Intestine, except rectum
Rectum

All other digestive organs
Lung

All other respiratory system
Breast

Cervix uteri

Corpus uteri

All other female genital organs
Prostate

All other male genital organs
Kidney and bladder

Skin (except melanoma)

All other sites

Unspecified sites and
generalized carcinomas

Leukemia and aleukemia

All other lymphatic and
hematopoietic tissues

(140-148)

(151)

(153)

(154)
(150,152,155-159)
(162)
(160,161,163-165)
(170)

(171)

(172)

(173-176)

(177)

(178,179)
(180,181)

(191)
(190,192-198)

(199)
(204)

(200-203, 205)
 

 

PATIENT INDEX CARD

NAME HOSP. NO.

 

 

 

ADDRESS REG. NO.

RACE
BIRTH DATE SEX
DIAGNOSIS

 

DATE OF DIAGNOSIS

 

REFERRED BY

 

CAUSE OF DEATH
AND DATE

 

 

 

FOLLOW-UP CONTROL CARD

 

NAME: REG. NO.

ADDRESS:

SITE: . DATE DIAGNOSED:
DATE OF LAST TYPE OF

FOLLOW-UP DOCTOR FOLLOW-UP REMARKS

 

 

 

 

 

 

 

 

 

 

 

 

 
 

 

HOSPITAL LETTERHEAD
(Name of Patient)
(Hospital patient number)
(Diagnosis of patient)
Re:
Pe. #:
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,

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 [] NOT FREE OF THE NEOPLASM []
2. DEAD: DATE OF DEATH PLACE OF DEATH

 

3.. MOVED AWAY: ovate 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 AUTHORIZATION 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. CO SPOUSES 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,

 

Enclosure

 

2. HAVE YOU RECOVERED FROM THE CONDITION FOR WHICH You WERE IN THIS
HOSPITAL?

yes (] no [J
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

 

 

 

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,

 

Enclosure

PRESENT WHEREABOUTS OF: (NAME OF PATIENT)

STREET ADDRESS

 

CITY STATE

 

 

PRESENT CONDITION:

APPARENTLY WELL [J NOT wetL []

 

 

25

aes sssstmamasssmmmaasaassaasi
 

= | PRIMARY SITE(S): ISC NO(S).

CASES DIAGNOSED FROM 19 TO 19

CANCER
TYPE OF | DATE

HER STAGE|INITIAL. | CONT STATUS vi
BASIS OF DIAGNOSIS THERAPY" OR DEATH | cow t dee

R

Ae AG DATE OF eee Or DIAGNOS!
NUMBER | NUMBER

PATIENT'S NAME |RAC A
8 py, |DIAGNOS!

 

T

 

 

1. THERAPY THAT AFFECTED THE CANCER: S. suRGERY, R-RADIATION, C. CHEMOTHERAPY, H. HORMONES
2. -wiTH cancer, WO.witHouT cancer. U-cancer STATUS UNKNOWN, DOC. peatH FROM OTHER CAUSES (aob Cancer sTatuS)

 
ce

 

 

  

 
    

 

 

 

  

 

 

 

 

 

 

 

 

 

 

  

  

  
 

  

  
    
  

 

 

  

 
 

 

  
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

HOSPITAL:
CANCER REGISTRY SUMMARY
CITY: YEAR:
SITE MALE CASES FEMALE CASES MALE AND FEMALE CASES
OF NUMBER NUMBER NUMBER | TOTAL MALE NuMBER NUMBER NUMBER | TOTAL FEMALE NUMBER NUMBER NOMBER | TOTAL MALE & FEM.
CANCER WHITE | UNSPEC.| NO. | % WHITE | UNSPEC, % WHITE | UNSPEC.! KO. | %
MOUTH AND PHARYNX |
OIGESTIVE SYSTEM
RESP | RATORY SYSTEM
BREAST
FEMALE GENITAL ORGANS
MALE GENITAL ORGANS
URINARY ORGANS
SKIN (EXCEPT MELANOMA)
OTHER & UNSPECIFIED SITES
LEUKEMIA & LYMPHOMA
TOTAL | i | 100.0 | | | { 100.0 | | | | 100.0
SITE METHOD OF DIAGNOSIS STAGE AT DIAGNOSIS
MICROSCOPIC] yay CLINICAL REGIONAL DISTANT STAGE
OF CONFIRMATION] ONLY | AND OTHER |UNSPECIFIED|  ToTAL LOCALIZED 1 wVOLVEMENT METASTASES |UNSPECIFIED| | TOTAL
CANCER No. No. %
MOUTH AND PHARYNX 100.0 100.0
DIGESTIVE SYSTEM jo 100.0 _ | 100.0
RESP 1 RATORY SYSTEM } 100.0 { 100.0
BREAST __ _ 100.0 I 100.0
FEMALE GENITAL ORGANS 100.0 : 100.0
MALE GENITAL ORGANS 100.0 ! 100.0
URINARY. ORGANS _ 100.0 100.0
SKIN (EXCEPT MELANOMA) Lo 100.0 1 100.0
OTHER & UNSPECIFIED SITES | 100.0 | 100.0
LEUKEMIA & LYMPHOMA | 100.0] --- | --- [ye |---| --- |. fo | oe
2 TOTAL [ | | | | | [100.0 | | | | | | | | 100.0
——S

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
EEE

 

REPORT OF CANCER SURVIVAL AND END RESULTS

FOR CASES DIAGNOSED AND/OR TREATED AT THE HOSP 1 TAL

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)
2. 3. 4, 5. 6. 7.

 

 

|.
YEAR | TOTAL
SURVIVAL AND END RESULTS CASES

A. CASES DIAGNOSED AND/OR
TREATED DURING THE YEAR(S)

 

 

 

NOT AT LAST FOLLOW-UP
FOLLOWED OR EXAMINATION
FOR FULL B2. WITH CANCER AT

cor ar WITHOUT CANCER

 

 

PERIOD LAST FOLLOW-UP OR
COVERED BY JEXAMINAT.ION

THIS B3. CONDITION UN-
REPORT KNOWN AT LAST

FOLLOW-UP OR
EXAMINATION

BuS SUM OF PATIENTS
NOT FOLLOWED FOR
FULL PERIOD OF
THIS REPORT

C. pATEENTS| CI. cLENtcaLLy
LIVING FOR FREE OF CANCER

FULL PER- \€2. NOT FREE OF

 

 

 

 

 

10D COV- CANCER
ERED BY C3. STATUS WITH
THIS REGARD TO CANCER
REPORT UNKNOWN

 

Cu. SUM OF PATIENTS
LIVING FOR FULL PE-
REOD OF THIS REPORT

D. PATIENTS] OJ. a. peaTH FROM

 

 

 

 

 

DEAD WITHIN OTHER CAUSES,
PERIOD CANCER PRESENT
COVERED b. DEATH FROM
BY THIS OTHER CAUSES,
REPORT CANCER NOT
PRESENT
D2. DEATH DUE TO
CANCER

 

D3. PRESENCE OF
CANCER NOT DETER-
MINED AT DEATH

DU. SUM OF PATIENTS
DEAD WITHIN PERIOD
OF THIS REPORT

E. PER CENT OF PATIENTS FOLLOWED
FOR FULL PERIOD COVERED, C4 _+ Da
A

F. PER CENT OF PATIENTS SUR-
VIVING FULL PERIOD COVERED BY

THIS REPORT, C4
A. B4

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

28

 
66

 

______ YEAR REPORT OF CANCER SURVIVAL AND END RESULTS

 

 

CASES DIAGNOSED IN 19
REPORT THROUGH 19

 

ALL
SITES

MOUTH
AXD
PHARYNX

DIGES-
TIVE
SYSTEM

BY MAJOR SITE GRO

 

Hospital
UPS
RESPIRA- | FEMALE| MALE OTHER &| LEUKEMIA
TORY GEN. | GEN. [URINARY syin | UNSPEC. AND
SYSTEM |[ORGANS| ORGANS | ORGANS : “SITES | LYMPHOMA

 

A. TOTAL NUMBER EXPOSED TO RISK

 

B. PATIENTS | Bl. witHouT CANCER

 

NOT pat PER)

FOR FULL PER-, « WITH CANCER

 

1OD COVERED
BY THIS RE- B3. CONDITION UNKNOWN

 

PORT ' BU. TOTAL

 

C PATIENTS! Cl. witHouT CANCER

 

 

LIVING FOR

FULL PERIOD C2. WITH CANCER

 

COVERED BY CONDI TION UNKNOWN

 

THIS REPORT ) 3.
{ Ch. TOTAL

 

DEAD WITHIN OTHER CAUSES,
PERIOD COV- CANCER

dD. aa Di. a. DUE TO
ERED BY PRESENT

 

THIS REPORT b. pue To
OTHER CAUSES,
CANCER NOT
PRESENT

 

D2. nove TO CANCER

 

 

D3. CANCER PRESENCE
UNDETERMINED

 

DU. ToTAL

 

E. PER-CENTOF PATIENTS FOLLOWED
FOR FULLPERIOD COVERED C4 * 04

 

 

 

F. PER CENTOF PATIENTS SURVIVING
FULL PER!OD COVERED C4
BY THIS REPORT A_- B4

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
08

 

—_____YEAR REPORT OF CANCER SURVIVAL AND END RESULTS

 

 

Hospital
. BY SELECTED SITES ‘
CASES DIAGNOSED IN 19 LG. INTES. KIDNEY LEUKEMIA
STOMACH} EXCEPT RECTUM | LUNG | BREAST | CERVIX | PROSTATE & SKIN &
REPORT THROUGH 19 RECTUM BLADDER ALEUKEMIA

 

 

 

A. TOTAL NUMBER EXPOSED TO RISK

 

 

B. PATIENTS (81. WITHOUT CANCER

 

NOT FOLLOWED
}B2. WITH CANCER

 

 

FOR FULL

PERIOD Cov-

ERED BY )B3. CONDITION UNKNOWN
THIS REPORT { BY, toTaL

 

 

CG PATIENTS (Cl. witHour cANcER

 

I
Se eee C2. WITH CANCER

 

 

 

 

FULL PERIOD

COVERED BY : 1

THIS REPORT }c3 CONDITION UNKNOWN

(cu. TOTAL

D. PATIENTS { DI. a. DUE To

DEAD WITHIN OTHER CAUSES,

PERIOD COV- CANCER

ERED BY PRESENT

THIS REPORT b. DUE To
OTHER CAUSES,
CANCER NOT
PRESENT

 

DUE TO CANCER

}02.

 

CANCER PRESENCE
UNDETERMINED

 

D3.
DY. ToTaAL

 

E. PER CENT OF PATIENTS FOLLOWED
FOR FULL PERIOD COVERED C4 - Da

 

 

F. PER CENTOF PATIENTS SURVIVING
FULL PERIOD COVERED C4
BY THIS REPORT _A_- B4

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
1g

 

 

 

YEAR REPORT OF CANCER SURVIVAL AND END RESULTS OF

PATIENTS

 

Hospital
BY SEX, STAGE, INITIAL THERAPY AND AGE AT DIAGNOSIS
CASES DIAGNOSED IN 19 REG. | SUR [SURGERY] 45 YRS|46 - 60/61 ~ 75|76 YRS.
TOA | Mace |FeMALE/“OCAL~\weTAS-1 GERY [& RADI-| 8 UND.| YRS. | YRS. | & OVE
REPORT THROUGH 19 TASES | ONLY | ATION | (AT _DX)|(AT DX) L(AT DX) /(AT_DX

 

 

A. TOTAL NUMBER EXPOSED TO RISK

 

B. PATIENTS (Bi. WITHOUT CANCER

 

W
NOT FOLLOWED }B2

FOR FULL PER- » WITH CANCER

 

 

10D COVERED )B3. conorrion UNKNOWN
BY THIS RE-
PORT. Bu. TOTAL

 

C. PATIENTS (Cl. wiTHouT CANCER

 

 

LIVING FOR

FULL PERIOD /€2. wiTH CANCER

 

COVERED BY }¢3. CONDITION UNKNOWN

 

TOTAL

THIS REPORT
(cs.

 

 

D. PATIENTS / DI. & DUE TO
DEAD WITHIN OTHER CAUSES,
PERIOD COV- CANCER
ERED BY PRESENT
DUE TO

OTHER CAUSES,
CANCER NOT

THIS REPORT b.
PRESENT

 

}D2.

DUE TO CANCER

 

CANCER PRESENCE
UNDETERMINED

 

{>3-
\ py.

« TOTAL

 

E. PER CENT OF PATIENTS FOLLOWED
FOR FULL PERIOD COVERED C4 + D4

 

F. PER CENT OF PATIENTS SURVIVING
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
and routinely operating a cancer regis-
try in a small-to-moderate-sized gen-
eral hospital (under 400 beds), as out-
lined in the American College of Sur-
geons’ Manual For Cancer Programs,
is a subject of considerable importance
for hospital administrators and mem-
bers of the medical staff, and one on
which there is a paucity of informa-
tion. This article is an attempt to re-
solve some of their questions concern-
ing the purely administrative costs
and requirements of a registry. It will
not deal with the voluntary supervisory
and guidance responsibilities of the
hospital’s Committee on Cancer in the
operation of a registry, or the profes-
sional requirements and cost of com-
prehensive analysis of registry data
and special studies. The duties of the
Committee on Cancer have been out-
lined in the College’s Manual, and the
cost of analysis of registry data and
special studies will vary according to
the different interests and needs of the
medical staff.

The major expense in the routine
operation of a hospital cancer registry
is for a secretary. Ideally, a cancer
registry secretary should have training
and knowledge comparable to that of a
medical secretary, with some aptitude
for elementary statistical tabulations.
However, in the absence of such a per-
son, a successful hospital cancer regis-
try may be operated by an alert general
secretary with no more than a high
school education, provided she receives
adequate training and has the close
and continuing supervision and guid-
ance of the hospital’s Committee on
Cancer. In general, the pay scale for a
medically knowledgeable cancer regis-
try secretary is comparable to that of

82

a medical secretary. The higher salary
for such a person, as compared with
that of a general secretary, will be
more than compensated for in greater
efficiency in transcribing, completely
and accurately, the pertinent data from
the medical records.

The personnel time required to oper-
ate a hospital cancer registry is not
only dependent upon the knowledge
and ability of the secretary, but also
the following variables: (1) the size of
the hospital and the volume of the can-
cer load; (2) the amount of detail re-
corded on the cancer registry abstract ;
(3) the organization of the medical
records department, and the avail-
ability of all medical charts (inpatient
and outpatient) to the cancer registry
secretary; (4) the completeness and
legibility of the medical record charts;
(5) the availability of information
from the pathology laboratory and the
department of radiology; and (6) the
response for follow-up information.

In general, it is estimated that a
cancer registry secretary will require
a maximum of one hour to register a
new cancer patient, and an average of
one-half hour per case, to obtain and
record follow-up information. This is
predicated on the assumptions that the
conditions noted in variables three to
six inclusive mentioned above are fa-
vorable. On the other hand, if the regis-
try secretary must hunt for medical
charts and/or for necessary informa-
tion lacking in the charts, and if she
has to send several letters before ob-
taining adequate follow-up informa-
tion, more time will have to be allowed.
The accompanying table gives esti-
mates of the optimum and maximum
number of actual work hours of secre-
tarial help required per week to carry
out the routine work involved in main-

taining a hospital cancer registry for

15 years, per 100 new cancer patients

annually.

It should be noted that these time
estimates will permit the secretary to
prepare routine tabulations and re-
ports of the registry data, at least an-
nually. However, she will probably not
have time te answer inquiries and re-
quests for information, or to code the
data for data processing equipment if
required, Provision must also be made
for work-breaks, sickness, and vacation
time. As noted above, the time of
physicians and other researchers to
prepare analytical and special study
reports evaluating the management of
cancer in the hospital—the funda-
mental reason for the registry—will
not be dealt with here, since this will
vary according to the professional re-
sources, interests and needs of the
medical staff.

The American College of Surgeons
has made no specific requirements with
respect to the forms to be used in a
hospital cancer registry. However, they
have suggested the following:

1. An abstract or summary of the hos-
pital medical chart of each primary
site of cancer in every cancer pa-
tient. (See pages 16 and 17.)

2. A patient index card to identify
every patient in the registry. (See
page 21.)

3. A follow-up control card to alert
the secretary to obtain up-to-date
information concerning the pa-
tient’s cancer. (See page 22.)

4. An accession register, usually kept
in a three-ring binder, in which the
cancer cases are recorded by year
of registration or diagnosis. (See
page 26.)

A generous estimate of the cost of

reproducing, by photo-offset, the ab-

stract form is $15 a thousand, and $10

a thousand for each of the other three

forms, or a total of $45. In greater
quantities this cost will be much lower.
On the other hand, the purchase of
forms, and special cabinets to house
them, from commercial sources will be
considerably higher.

Since the cancer registry secretary
must work in close consultation with
the Committee on Cancer, it is impor-
tant that her supervision be their re-
sponsibility. Also, it is desirable that
the cancer registry be located in a sepa-
rate room (or corner) so that the secre-
tary. may work with a minimum of dis-
traction, The area reserved for the
registry should be large enough to con-
tain a desk and chair, typewriter, four-

 

Estimates of the Optimum and Maximum
Number of Hours Per Week of Secretarial
Help Required for the Routine Operation
of a Hospital Cancer Registry for 15
Years' Per 100 New Cancer
Patients Annually*

Optimum Maximum
Ist Year 1.9 1.9
2nd Year 2.5 3.0
3rd Year 2.9 : 3.9
4th Year 3.3 4,7
5th Year 3.7 5.4
6th Year 4.0 6.1
7th Year 4.3 6.6
8th Year 46 . 7.2
9th Year 4.8 7.7
10th Year 5.0 8.1
llth Year 5.3 8.6
12th Year 5.4 8.9
13th Year 5.6 9.3
14th Year 5.8 9.6
15th Year 5.9 9.9

NOTE: A hospital may compute its personnel
requirements by muitiplying either col-
umn by one ‘hundredth of its bed
capacity. For example, a 250 bed hos-
pital will require an average of 4.8

ours of secretarial help per week dur-
ing the first year (1.9 X 2.5= 4.8), and
9.3 hours per week during the fifth
year (3.7 X 2.5 = 9.3).

1Based on survival experience, reported in the
California Tumor Registry Monograph “Can-
cer Registration and Survival in California,”

°There ig a great deal of variation in the rela-
tionship between the number of beds and new
cancer patients. In California, the case/bed
ratio ranged from 0.73 in county hospitals to
1.61 in private hospitals. These estimates are
based on a one-to-one relationship of new pa-
tients annuolly and the average daily total
bed cupacity.

 

 

 

33
drawer file cabinet(s) to house cancer
registry abstract forms, two-drawer
eabinet(s) for the patient index and
the follow-up control files, and a tele-
phone. The hospital should also provide
basic reference books such as the Man-
ual for Tumor Nomenclature and a
medical as well as an ordinary diction-
ary, a sturdy three-ring binder for the
accession register, stationery and post-
age, and miscellaneous other secretar-
ial supplies,

Other than the initial equipment and
overhead costs, more than 95 per cent

34

of the costs of the routine operation of
a registry in the average general hos-
pital is for secretarial help. This. ex-
pense, assuming the efficient organiza-
tion of the medical records department
and the co-operation of the medical
staff, is not burdensome and can be ab-
sorbed by most hospitals,

References

1. California Tumor Registry : Cancer Registration
and Survival in California. Berkeley ; State of Cali-
fornia Department of Public Health, 1963.

2, American College of Surgeons: Manual for Can-
cer Programs. Chicago, 1961.
Automatic Data Processing of Cancer

Registry Information
Abraham Ringel, M.A.

The use of automatic data processing
machines to expedite and facilitate the
tabulation, follow-up, and analysis of
cancer registry data is not new. The
rental or purchase of these machines is
costly, and the necessary personnel to
operate them require special training,
and are difficult to recruit. Therefore,
their use in the average general hospi-
talis justified only after registries have
accessioned several thousand cancer
cases, (and are adding new cases at a
minimum rate of about 300 annually),
and the equipment and personnel can
be used in conjunction with other medi-
cal or administrative record-keeping
procedures.

The information entered on the can-
cer registry abstract form suggested
by the American College of Surgeons
(see pages 16 and 17) may be tran-
slated into a numerical code for a punch
card system such as that shown on
pages 37-41.) Shown on page 42 is a
sample code sheet on which the coded
information may be entered. This form
may be duplicated to 84% by 11 inches
in size and filed in alphabetical order in
a standard file cabinet drawer. On the
other hand, some registries code the
initial identifying and diagnostic and
treatment information through the pa-
tient’s first discharge from the hospital
(column 52) on the front of a 5- by
9-inch card, and the follow-up informa-
tion on the reverse side to facilitate
handling and filing. It will be noted that
the information through column 52
identifies and describes the patient, and
the initial diagnosis and treatment of
the primary cancer through the pa-
tient’s first discharge from the hospital.

Columns 58 through 69 should refiect
the very last date of follow-up of the pa-
tient and all of the cumulated informa-
tion concerning survival time (columns
56-58), different types of subsequent
treatment following initial therapy
(column 61), and, if desired, the total
number of hospital admissions (column
66) and hospital days (columns 67-69)
for this primary cancer.

In general, once coded, the first 52
columns need never be changed except
if the primary site, histological diag-
nosis, or other items have to be cor-
rected. All cases, new and old, should
always be coded completely through the
end of the code sheet. The date of last
contact (follow-up) of new cases should
be the date of discharge from the hos-
pital, and the information that follows
should reflect this date. Thereafter, the
last date of contact of the patient, to-
gether with all of the subsequent fol-
low-up information, are to be coded at
least annually until the patient’s death.
The unassigned columns in the 80-
column punch-card may be used for
codification of more specific informa-
tion concerning the various sites of can-
cer for special studies, e.g., smoking
history to study lung cancer, eating
habits to study cancer of the stomach,
etc.

After the abstracted information has
been coded, a punch-card should be
made and filed in numerical order. After
new follow-up information has been en-
tered on the abstract form and coded,
the code sheet should be matched with ©
the punch-card for the case, and both
sent to the key-punch machine operator.
The operator can then duplicate the ini-

B85
 

tial information (columns 1 through
52) and punch in the up-dated follow-up
information. The old punch card should
then be destroyed, and the code sheet
and new punch card should be filed.
After the patient dies, the last follow-
up information is to be coded and en-
tered on a punch-card, and the code
sheet may be destroyed.

A deck of punch cards which reflect
the collected up-dated information in
the cancer registry together with a
sorter-counter may be used to expedite
counts by site, sex, stage of the disease

at diagnosis, types of treatment, iden-.

tify patients who need to be followed,
ete, With a tabulator the cards may be
used to print out annual accession
books by site and year of diagnosis, to

36

identify and print out part of the fol-
Jow-up form letters to go to physicians,
to help in preparing survival and end
results statistics, and in other ways.
Some registries also use duplicate decks
of the punch-cards as their patient in-
dex and follow-up control files.
Needless to say, a method of process-
ing cancer registry information with
the aid of machines is not the only
answer for the proper analysis and use
of the wealth of information accumu-
lated in the hospital cancer registry.
Unless the information so processed is
properly communicated to the entire
medical staff and is used to further im-
prove care of cancer patients, the can-
cer registry is not worth the time, ef-
fort, and resources expended on it.

 
COLUMN

1-5

6 -30
31
32

GENERAL HOSPITAL CANCER REGISTRY CODE

ITEM AND 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.

REGISTRY CASE NUMBER

The registry number is the patient’s permanent ident-
ification number. Assign a registry number to each
new cancer patient 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.

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.)

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:
1 -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 1 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.

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

33-34 AGE AT TIME OF INITIAL DIAGNOSIS
Record age of patient at time of initial diagnosis
of this primary cancer. If originally diagnosed any-
where else, code age according to the date of initial
diagnosis elsewhere. Record age directly.

XX —Age unknown

35 SEX AND RACE

Q —White male 5 —~Other female

1 -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
9 —Married
3 Divorced, or Separated
4 —Widow, or Widower
X ~Unknown

37 TYPE OF ADMISSION

| —Private or Semi-Private
9 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-
ing.”

XXX —No histological diagnosis
45 BASIS OF DIAGNOSIS

] —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 Microscopic Confirmation and X-ray are
indicated, code #2.)

38
COLUMN
46 ~48

49

50

51

52

ITEM AND CODE
DATE OF INITIAL DIAGNOSIS

Code year directly in Column 46-47. (eg., 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.

WHERE DIAGNOSED INITIALLY BY ANY MEANS

1-At this hospital

2 —-At another hospital
3 -In a doctors office
X -Unknown

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

TYPE OF INITIAL TREATMENT DIRECTED TO THIS CANCER

0 —None, treatment refused, or treatment not completed

] ~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 therapy.

STATUS OF PATIENT WITH RESPECT TO THIS CANCER AT
DISCHARGE FROM HOSPITAL

0 - Dead -

1 ~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
53-59
56 - 58

59

40

ITEM AND CODE

DATE OF LAST CONTACT WITH PATIENT
Same code as Columns 46 - 48

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 = 1 month; etc.)

SOURCE OF FOLLOW-UP

1 -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

61

CANCER

Q ~Dead -No evidence of this cancer

1 —-Dead —With this cancer

9 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

ALL TREATMENT FOLLOWING INITIAL TREATMENT RELATING
TO THIS CANCER ONLY (cumulated)

0 -None or check-up only

1] -Surgery

2 -Radiation

4 —Chemotherapy and/or Hormonal therapy

9 ~Palliavive and supportive treatment (see column
ol .

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.
 

COLUMN
62 -65
66

67 - 69

70 - 80

ITEM AND CODE

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..,

CUMULATED TOTAL NUMBER OF HOSPITAL ADMISSIONS FOR
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

9 Two admissions

3 -Etc.

9 —Nine or more admissions
X -—Unknown, or not available

CUMULATED TOTAL NUMBER OF HOSPITAL DAYS FOR THIS
CANCER ONLY

Determine the total number of 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

AVAILABLE FOR SPECIAL STUDIES

41
 

GENERAL HOSPITAL.
Cancer Registry Code Sheet

REGISTRY CASE NO.
(cot. 1-5)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

COLUMN
6-30 NAME OF PATIENT
COLUMK {TEM CODE COLUMH [Tem CODE
3 NO. OF PRIMARIES 42-44 HISTOLOGICAL DIAGNOSIS | |
32 RESIDENCE OF PATIENT 45 BASIS OF DIAGNOSIS
ag.34 | AGE AT INITIAL DIAGNOSIS | 46-48 DATE OF INITIAL piacnos's| |
35 SEX AND RACE 49 WHERE FIRST DIAGNOSED
36 MARITAL STATUS 50 STAGE AT INITIAL DIAGNOSIS
37 JYPE OF ADMISSION 51 TYPE OF INITIAL TREATMENT
38-41 | PRIMARY SITE | | | 52 CONDITION AT DISCHARGE

 

 

 

 

 

 

FOLLOW-UP DATA

LIVING OR
CAUSE OF DEATH

TOTAL
HOSPITAL DAYS

DATE
LAST SEEN SURVIVAL TIME

SOURCE OF
FOLLOW-UP
TOTAL AD-
MISSIONS

67 | 638 | 69 | 70 | 71 | 72 | 73 | 74

a

61 | 62 | 63 | 64 | 65

mn
o
QD
o

53 | 54] 55 1 56 | 57 | 58

 

 

 

 

42