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 O rder N um ber 8019007

Consistency of cancer sites recorded at the Cancer Registry and

on death certificates in Puerto Rico

Laureano, Evelyn, Ph.D.

Fordham University, 1989

Copyright ©1980 by Laureano, Evelyn. All rights reserved.

UMI
300 N. Zeeb Rd.
Ann Arbor, MI 48106
 CONSISTENCY OF CANCER SITES RECORDED

AT THE CANCER REGISTRY AND ON DEATH CERTIFICATES

IN PUERTO RICO

BY
EVELYN LAUREANO
M.P.A., University of Puerto Rico, 1973
M.A., Fordham University, 1978

DISSERTATION
SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS
FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN SOCIOLOGY
IN THE DEPARTMENT OF SOCIOLOGY AND ANTHROPOLOGY
AT FORDHAM UNIVERSITY

NEW YORK
1989
 ACKNOWLEDGMENTS

I would like to acknowledge the contributions made by a number of

people toward the completion of this thesis. Many thanks are due to

my principal advisor, Dr. Douglas T. Gurak, and to the other committee

members, Dr. John Macisco and Dr. Rosemary Santana Cooney, for their

valuable recommendations.

I thank Ms. Raquel Torres and Ms. Lucy Echevarria of the Cancer

Registry in Puerto Rico and Professor Maggie Matos of the University

of Puerto Rico for their significant comments on the earlier drafts.

Ms. Anne Chevako and the rest of the Publishing Resources staff

members in Puerto Rico are also acknowledged for their help and

patience while I was writing and editing this work.

 DEDICATION

This thesis is dedicated to the memory

of my father and mother, Ran6r. Laureano

and Marfa T. Osorio, who always taught

members of our family to be persistent

and consistent in any everyday life

project. I hope every young member of

the family will follow this teaching

with strength and courage.

To my husband, Professor Etiony

Aldarondo who gave me support and

emotional help at every moment of the

dissertation work.
 Copyright 1989 by Evelyn Laureano

All rights reserved. No part of this manuscript may be reproduced,

stored in a retrieval system or transmitted, in any form or by any
means, electronic, mechanical, photocopy, or otherwise, without the
prior written permission of the author.
 iv

TABLE OF CONTENTS

ACKNOWLEDGEMENTS ............................................. i

DEDICATION................................................... ii

LIST OF TABLES ............................................... vii

LIST OF MAPS ................................................. ix

INTRODUCTION ................................................. 1

Chapter
I. STATEMENT OF THE PROBLEM: A REVIEW OF LITERATURE ....... 5

Conclusions ....................................... 31

II. SOURCES OF CANCER DATA IN PUERTO R I C O .................. 34

The Cancer Registry ................................ 35

History ........................................ 35
Organization .................................... 36
Activities ..................................... 36
Objectives ..................................... 37
Procedures ....................... 39
Patient Clinical Abstract ....................... 39
Completeness .................................... 41
Quality Control ................................. 41
The Demographic Registry ...................... 42
The Flow of Records ............................. 42
The Registration Section ..................... 42
Information Control Unit ............. 43
Review Unit .................................. 43
Coding Unit .................................. 43
The New Death Certificate .................... 44
Conclusions ..................................... 46

k
c III. MORTALITY TRENDS, CANCER MORTALITY AND
CANCER INCIDENCE IN PUERTO R I C O ....................... 47

Cancer Mortality Differentials in Puerto Rico;

1980 and 1982....................................... 55
Age ........................... 55
Specific Sites and Sex ................. 59
Municipality of Residence ....................... 65
Cancer Incidence in Puerto Rico;1980 and 1982 ....... 75
Incidence ....................................... 75
Incidence by Sex and Age ............ 75
Incidence by Primary Site and.... Sex ............ 78
Conclusions ...... 84

IV. METHODOLOGY TO EVALUATE CONSISTENCY .................. 85

Objectives ........................................ 85
Operational Definitions of Variables .............. 85
Sources of the Data ............................... 93
Flow of Data ...................................... 93
Method of Analysis................................ 94
Rationale of Tabulations .......................... 96

V. FINDINGS............................................. 98

Matched Cases, Rejected Cases, and Consistency of

Cancer Clinical Records and Death Certificates ...... 98
Consistency and Sociodemographic Correlates ........ 99
Sex ............................................ 102
A g e .................................... 104
Specific Sites and Percentage of
Consistency by Data Source ...................... 107
Unspecific Cancers .............................. 113
Institution Reporting Death ........ 113
Person Informing of the Death.. .................. 115
Physician Who Certified the Death ...... 117
Basis for Diagnosis ................ 119
Region of Death and ConsistencyPercentages ....... 124

VI. CONCLUSIONS AND RECOMMENDATIONS ...................... 126

Conclusions ...................................... 126

Recommendations .................................. 133

(
 Vi

c APPENDIXES ................................................... 136

APPENDIX A Department of Health Cander Coding Form ........ 137

APPENDIX B Death Certificate ............................. 139
APPENDIX C Letter from the Biometry Branch ................ 141
APPENDIX D Unspecified Codes and Glossary......... 142
APPENDIX E Estimate of Lymphomas Cancers .................. 147
APPENDIX F Estimate of Lymphomas Cancers by Age ........... 148
APPENDIX G Table A and Table B ........................... 149
APPENDIX H Unspecified Cancer Cases by Age ................ 153

BIBLIOGRAPHY ................................................. 154

ABSTRACT..................................................... 158

V I T A ......................................................... 160
 LIST OF TABLES

General Mortality Rates, Puerto Rico, 1940 to 1982 .......

Cause Specific Death Rates, Puerto Rico, 1977 to 1982 ....
Mortality Rates by Sex, Puerto Rico, 1980 to 1982 ........ 52
General Mortality Rates by Age Groups and Sex, 1980 ...... 53
General Mortality Rates by Age Groups and Sex, 1982 ...... 54
Cancer Mortality Rates, Puerto Rico, 1931 to 1982 ........ 56
Rates of Cancer Deaths byAge Groups, 1980 to 1982 ....... 58
Cancer Mortality Rates bySpecific Site and Sex
Puerto Rico, 1980 ................................... 61
Cancer Mortality Rates by Specific Site and Sex
Puerto Rico, 1982 ........................ . 63
Principal Specific Cancer Causes of Death
For Males, Puerto Rico, 1980 and 1982 ................. 66
Principal Specific Cancer Causes of Death
For Females, Puerto Rico, 1980 and 1982................ 66
Cancer Mortality Rates byMunicipality of
Residence, Puerto Rico, 1980 and 1982 ................. 67
Municipalities With Ten Highest Cancer Mortality
Rates, Puerto Rico, 1980 to 1982 ..................... 70
Age - Specific Cancer Incidence Rate by Sex
Puerto Rico, 1980 .................... ............... 76
Age - Specific Cancer Incidence Rate by Sex
Puerto Rico, 1982 .................................... 77
Crude Incidence Rates Among Males For
Twenty Leading Cancer Sites, Puerto Rico,
1970 and 1980 ........................................ 79
Crude Incidence Rates Among Females for the
Twenty Leading Cancer Sites, Puerto Rico,
1970 and 1980 ....................................... 80
Crude Incidence Rates Among Males for the Twenty
Leading Cancer Sites, Puerto Rico,
1970, 1980 and 1982 .................................. 82
Crude Incidence Rates Among Females for the Twenty-
Leading Cancer Sites, Puerto Rico,
1970, 1980 and 1982 .................................. 83
Percentage Distribution of Matched and Rejected Cases ....
Percentage Distribution of Consistent and
Inconsistent Cases ..................................
Percentage Distribution by Age and Sex of
Matched Cancer Records ...............................
Percentage Distribution of Consistent
Cancer Cases by Sex ..................................
 viii

©
c 24. Percentage Distribution of Consistent
Cancer Cases by Age .................................. 106
25. Percentage Distribution of Consistent Cancer
Cases by Sex and Age ................................. 108
26. Cross-Classification of Cancer Sites by
Consistency Percentage and Source .................... Ill
27. Distribution of Unspecific Cancers
by Organ System........... 114
28. Distribution of Consistent Cases by Type
of Institution Where Death Occurred .................. 116
29. Percentage Distribution of Consistent Cases
By Person Who Informed Death ......................... 118
30. Percentage Distribution of Consistent Cases
By Type of Physician ................................. 120
31. Percentage Distribution of Basis for Diagnosis
For Consistent Cases, Puerto Rico .................... 122
32. Percentage Distribution of Consistency
By Region of Death ...................... 125
 ix

List of Maps

Page

1. First Ten Municipalities with High Cancer Rates, 1980 ....... 73

2. First Ten Municipalities with High Cancer Rates, 1982 ....... 74
c INTRODUCTION

Mortality research has had a history of neglect, and in recent

decades, such research has taken second place to research into

reproductive behavior. Moreover, demographers have concentrated on

refining analytical tools and developing improved techniques for

measuring mortality from inadequate data, while neglecting

investigation into the accuracy of vital and health statistics.

That cause-of-death statistics are of dubious accuracy is the

primary conclusion of research studies in countries other than Puerto

Rico. Such studies report discrepancies between the medical

information provided by the death record reporting cancer and other

sources of clinical and pathological information. To date, however,

it has not been determined if this is the case in Puerto Rico.

Due to the scarcity of research on possible discrepancies in

cancer statistics from Puerto Rico, the chief purpose of this study is

to evaluate consistency between cause-of-death statements on death

certificates and diagnoses in clinical records collected by the Puerto

Rico Cancer Registry Program, combining data for 1980 and 1982.

For the purposes of this study, the concept of consistency was

defined as the exact correspondence between death certificate

codifications for the underlying cause of death and the diagnoses

which appear in clinical records. Consistency is analyzed using the

sociodeaographic characteristics of age, sex, place of death,

L
1
 2

Institution reporting death, diagnosis of the certifier and the death

informant. The diagnoses coded in the death certificates and clinical

records under study are compared so as to find sources of variation

that affect consistency.

There is no agreement among researchers on a definition or

methodology for systematically assessing the accuracy of cancer data.

Early research into the consistency of cancer data, as discussed in

Chapter I, measures accuracy primarily by comparing clinical records

and death certificates with autopsy records. The research results

suggest that the U.S. National Center for Health Statistics should

consider establishing, in conjunction with states and territories, a

standardized methodology for continual validation of mortality data to

determine the exactness of mortality and incidence data for research

purposes and to establish a comprehensive public policy aimed at

preventing and eradicating specific diseases.

Chapter II describes the two sources of cancer data in Puerto

Rico: the Central Cancer Registry and the Demographic Registry, as

the documents from both sources are primary sources in this study of

cancer mortality data. An evaluation of these data sources reveals

that the Central Cancer Registry is the better source of clinical and

medical data for use in scientific research; the Demographic Registry

uses the death certificate data solely for deriving mortality

statistics. The recent revision of the death certificate format was

made only to satisfy local and federal requirements; there is scant

evidence that it is used for research purposes.

Since only limited research has been done on the subject,

accurate data from Puerto Rico Is the first priority in assessing the

magnitude of cancer incidence on the Island. Chapter III includes the

most salient cancer statistics for 1980 and 1982 as well as some

historical figures.

The data indicates that cancer incidence, insignificant in

1931, had become the second leading cause of death in Puerto Rico by

1980. Cancer of the digestive system is the primary cause of total

cancer deaths, with higher numbers of males than females. Cancer of

the breast is the leading cause of cancer death among females alone,

and cancer of the prostate and lung, among males. Most cancer deaths

occurred among people aged 65 and older. For both sexes, but

particularly for males, cancer incidence increased with a-dancing

age. The San Juan metropolitan health region in northern Puerto Rico

had the highest regional cancer rates in both years studied.

Chapter IV describes the methodology used in evaluating the

consistency between recorded causes-of-death and clinical diagnoses.

Computer tapes for 1980 and 1982 were requested from the Puerto Rico

Demographic Registry and processed at the Puerto Rico Health

Department's Computer Center. The computer merged cancer deaths and

clinical cancer records, using a master file of all cancer records

since 1950. The result is information on the consistency of coded data

by cause-of-death cancer primary sites and by selected

sociodemographic variables. This is the first time that several of the

sociodemographic variables are included in a cancer mortality study.

Chapter V reports the variety of findings of the study.

Perhaps the single most important finding was that there is only a
54.5 percent consistency rate between the data coded by the

Demographic Registry and that coded by the Central Cancer Registry.

A total of 75.8 percent of the cases were diagnosed with a positive

histology. In addition, consistency levels varied by basis of

diagnosis, patient age and person informing death, institution, region

of death and physician attended diseases. Major sources of variation

were found to be basis for diagnosis, informant of death, region of

death, and type of institution where death occurred.

 CHAPTER I

STATEMENT OF THE PROBLEM: A REVIEW OF LITERATURE

Death certificates are the primary source of mortality data

throughout the world. Particularly with cancer, they often provide

the only available Information; in other cases, they are considered to

contain information superior to existing cancer incidence data.^

Mortality statistics have proved useful for epidemiological studies,

geographic studies, time series, and correlation studies, and have

been used to identify cases for retrospective evaluation of possible

etiological factors. It is therefore essential that mortality data be

2
reliable and accurate.

In 1950 the World Health Organization's Expert Committee on

Health Statistics stressed the importance of evaluating the accuracy

of diagnoses entered on death certificates and recommended research

3
into the matter, with special reference to cancer. Since then,

^Susan S. Davesa, Earl S. Pollack, and John L. Young,

"Assessing the Validity of Observed Cancer Incidence Trends,” American
Journal of Epidemiology 119 (1984); 274-291.

^Constance Percy, Edward Stank, and Lynn Gloeckler, "Accuracy

of Cancer Death Certificates and Its Effect on Cancer Mortality
Statistics," American Journal of Public Health 71 (March 1981):
242-250.

^T.H. Crawford Barclay and A. J. Phillips, "The Accuracy of

Cancer Diagnosis on Death Certificates," Cancer 15 (January 1962): 5-9.

5
researchers have been working on this approach to mor t a l i t y data, but

have been hampered by differences In the concepts and definitions of

the issuer and procedures the: were utilised. They have used various

date sources and methodologies to measure consistency between deetr

certificates anc clinical records. Some, for instance, used autopsy

records and interviews with diagnosing physicians while otters used

patbclogical aDd histological records.

In a study covering the sever, years from 1S50 :c 195t, Crawford

and Phillips measured tre accuracy of cancer diagnoses or. ceatr.

certificates ir. Saskatcr.ewar.. Canada by comparing them tc tre

diagnoses on clinical records. Crawford and Phillips attempted tc

determine the "cancer over-diagnosis factor" through the number of

death certificates listing cancers that had not beeD reported on the

p a t i e n t s 1 clinical records. Patients known to have had cancer, but

whose death certificates did not include this diagnosis, made up the

"under-diagnosis factor."

The group with death certificates listing cancers which were

not reported on clinical records (over-diagnoses) was subjected to

further special study. That is, all relevant clinical, radiological

and laboratory deta were requested from the doctor attending tr.e

patient during tne terminal pr.ase of the illness. After this

procedure, a new diagnosis was made, using all available data with the

cooperation of medical attendants, physicians and clinical staff.

The evaluation of death certificates representing

4Ibid., p. 5.

*
u oder-diagnosis vas more difficult, although a partial assessment of

the under-diagncsis factor vas possible. By cress checking the names

c-f ell residents of the province wnc die: vithir. tne period against

those or the Cancer Commission r e t o r t s , it vas possible tc identify

certain patients vhc had carter.

The death certificate diagnoses conic not be con:'treed in a

number of cases, but over-diagnosis and under-diagnosis percentages

coulc be established. The cancer over -d: egnosi s factor ranged netveet.

13.1 percent in I95C and 8.9 percent in 1956, averaging 11.. percent

ever toe sever, years under review. iT.-der-ctsgnosis ranged fro: ; lev

of 11 percent in 1951 to a high of In.* percent ir 195*.. for an

average of !*• percent over the sever.-year p e r iod,^

Over-diagnosis was also treasured by cancer site. Crawford and

Phillips calculated an error rate of 22.7 percent in cancers of the

pancreas, followed by cancers of the stomach (15 percent), large

intestine (19.7 percent), lung (13.6 percent), urinary organs (12.2

percent), and prostate (11.7 percent). For every other site, the
£
error factor was less than 10 percent.

Since 1931 cancer has been identified as a growing cause of

deatr, in Saskatchewan. The Saskatchewan Cancer Control Act cf 1931

requires all practicing physicians in the province, and all hospitals,

to report all cases of cancer falling within their responsibility.

^Ibid., p.5.

6Ibid., p.6.
This requirement permits the study to identify and include virtually

all patients with cancer from 1930 to 1956. The research of Crawford

anc Phillips therefore arrears tc be reliable 1c terms of coo pie:*:,ess

of data as It includes ell career cases for the period subyectec tc

s:udy.

Crawford and Phillips' study is the first to propcse £ w a y tc

measure the completeness of cancer deaths and cancer registry

statutes. Their m e t h o d o l o g y provides the o p p o r t u n i t y to identify

cancer deaths that w ere not diagnosed previously and reported ir.

hospital records. It else ioer*i::es bcsritel cancer patients wr.-tse

death certificates contain no record of the disease.

It is important to mention that this study identified the

over-diagnosis and under-diagnosis of cases by site, but it failed tc

evaluate either the total consistency between the cancer reporting

systems or any varia t i o n s in consistency by s o ciodemographic variables.

In a 1956 Pen n s y l v a n i a study, conducted in cooperation with the

Pennsylvania Department of Health, Moriyama explored the use of death

certificates to trace possible relationships between lung cancer and

smoking, place of residence, and work history. Tne death certificates

were selected from the IC— percec: Current M o rtality Sample sen: to the

National Office of Vital Statistics as a representative sample of

deaths in the state and included 1,837 deaths occurring in a

three-month period. Additional information was collected from

certifying physicians to determine the possibility of measuring the

 .9

quality of medical certifications of various disea s e s . ^

To measure the quality of mortality data, Moriyama asked

physicians who ha: signed the death certificates for information

related to the d:agncses. Tne completed cuesti:rra:res were rev: e wee

against the original cause-of-deat'r statements and infontation was

rated according tc tne method used tc support diagnostic information,

the consistency between medical certification and diagnostic evidence,

and the physician's opinion of certainty of diagnosis.

The q u a l i t y of information was m e a sured ir. terms of the amount

of clinical data reported anc the information source: autopsy, biopsy

or microscopic examination. Mori yams found that the quality of

reported information was higher for malignant n e o p l a s m s than for other

cancers. In 65 percent of the deaths attributed to cancer, the

diagnostic information was rated "very good" because it was based on

microscopic e xamination of tissues. Further, Moriyama explains that

"while the numbers studied are not large enough to yield more than

suggestive results, the diagnostic evidence for malignant neoplasms

g
appears weakest for cancer of the stomach and pancreas." These

findings agree with prevailing clinical opinion. The diagnoses of

malignant neoplasms of the lymphatic and hematic systems were

particularly well supported, and were rated "very good' or "good" for

^Iwao M. Moriyama et al, "Inquiry into Diagnostic Evidence

Supporting Medical Certifications of Death," American Journal of
Public Health 48 (October 1958): 1376-1387.

8Ibid., p. 1381.
every death from leukemia and lymphoma.

When medical certifications of death were compared w:- re

diagnostic information reported on the physicians' questions-ir s, t

reported causes were the "roost probable diagnosis" in 79 per. -ri of

the cases. Diabetes, malignant neoplasms, and tuberculosis ro-c. ived

high ratings (85.8 percent) as "most probable diagnoses."

Moriyama concluded:

The accuracy and completeness of cause of death statements d<perc

upon: (1) availability of pertinent diagnostic information, (.1)
diagnostic acumen on the part of the physician, and (3) the r rre
in which diagnoses are reported on the death certificates.°

He also pointed out the limitations of using autopsies as

sole validation of accuracy, explaining:

Other investigators have approached the diagnostic accuracy pru^a.

by comparing the medical certification with findings for deaths
coming to autopsy. However, it is frequently difficult to re 1 *
the pathological findings to each other or to the sequence of
events leading to death. Furthermore, diagnoses of clinical
entities cannot always be established by autopsy findings.

The Moriyama study differs from that of Crawford and Phil ids

by its use of a three-month sub-sample of the population from a :(■

percent mortality sample in Pennsylvania. Moriyama weighed the snmr

to represent one-tenth of the deaths for the three-month period

is, the number of deaths in the Current Mortality Sample. Howev* t*

type of sample used has limitations, since it excludes various

specific causes of death. This shortcoming suggests the need for

9Ibid., p. 1385.

10Ibid., p. 1386.
 11

supplementary data to arrive at definitive conclusions.

However, the Moriyama research provides a criterion for

measuring the quality and consistency of medical certification on

death certificates, not only for malignant neoplasms, but for other

causes of death. The methodology includes a substantial list of useful

procedures categorized by type of disease. Thus, the research is an

extraordinary source that is useful as point of departure in the

evaluation of the quality of mortality statistics in general.

In another study of the reliability of lung cancer death

certifications — this time in Leeds, England — Bonser and Thomas

(1959) selected a sample of 1,036 death certificates issued from 1950

to 1954 bearing the codes for cancer of the trachea (including bronchi

and lungs) and pleura (codes 162 and 163).** All the cases recorded

in the two chief Leeds hospitals were classified according to their

agreement with corresponding clinical records. The clinical records

were reviewed in terms of clinical evidence and autopsy results.

Bonser and Thomas found that only 7.5 percent of the clinical

diagnoses failed to appear on the corresponding death certificates.

Excluding 20 patients who were still alive, this translates to a 92.5

percent agreement between hospital-diagnosed lung cancers and those

certified at death. The researchers explain that the errors were

caused in part by ambiguity of the wording of the certificates, in

part by misdiagnoses, and in part by the Intervention of other causes

^-Georgina M. Bonser and Gretta M. Thomas, "An Investigation

of Cancer of the Lung in Leeds,” British Journal of Cancer 13 (March
1959): 1-12.
 ^ 12
of death.

This research deals only with cancer of the trachea and pleura,

posing obvious limitations in studying the consistency of data of

other cancer sites and other diseases. However, it demonstrates that

if death certificates are to be used as a basis for the

decision-making process in establishing public health policy, the

clinical data on which they are founded must be reviewed and taken

into consideration. This method of evaluation shouldinclude an

experienced physician and the cooperation of hospital records

personnel and other staff members.

Alderson and Meade (1967) pointed out, in a study of the

13
accuracy of diagnoses on death certificates, that in Great Britain

studies of accuracy have been carried out by three chief methods:

1. Comparing death certificates with autopsy findings

2. Assessing the evidence for the diagnosis on the certificate

by sending a questionnaire to the certifier

3. Comparing the wording of the death certificate with the

clinical case notes

Alderson and Meade examined the coding of the underlying cause

of death as well as the principal condition treated for 1,216 deaths

at Oxford Hospital. The purpose of the research was "to see to what

12Ibid., p. 12.

13 M.R. Alderson and T.W. Meade, "Accuracy of Diagnosis on

Death Certificates Compared with that in Hospital Records," British
Journal of Preventive Social Medicine 21 (1967): 22-29.
extent the two codings differed and to Identify factors associated
14
with discrepant codings."

The 1,216 deaths were initially grouped following the Inter­

national Classification of Diseases (ICD) and using records linkage.

The coding for 60 percent of the deaths fell under the same list

numbers for both the principal condition treated (hospital diagnosis)

and the underlying cause of death (coded from the death

certificate)

The Oxford Record Linkage Study also includes such variables as

age, sex, social class, marital status, hospital and specialty

concerned, length of stay, and whether an autopsy was performed.

The results of the first examination of records (1,216) show

that a significantly higher proportion of discrepant codings were

found for particular diseases, certain hospitals, and for increasing

age and length of hospital stay.

Alderson and Meade's hypothesis was that discrepancies were

probably associated with individual hospitals and with the age of the

deceased. The elderly suffer from certain conditions which might be

directly associated with discrepant codings, such as cerebrovascular

accidents, arteriosclerosis, and pneumonia, and these patients tend to

be admitted to certain specific hospitals. Also the elderly usually

suffer from more than one disease, making it difficult to report the

exact cause of death. For deaths occurring in "long stay hospitals,"

14Ibid., p. 22.

15Ibid., p. 22.
it can be expected that a certain number of deaths would occur from

conditions unrelated to those which originally led to the hospital

admissions. Or, for example, patients may suffer from complications

that lead to death, which in turn cause difficulties in the

codification of the exact cause of death.^

Alderson and Meade's second examination of patient hospital

records evaluated the original clinical records and notes in order to

determine the source of discrepancies. The selected sample only

included those records where the final and previous admissions were in

the same hospital. Records from hospitals other than the "Oxford Study

Area" were not examined. From the 210 possibilities (the merging of

105 principal conditions plus 105 death records) a total of 42 cases

(40 percent) reported different codings; 63 cases (60 percent) had the

same diagnosis. This result agreed with the results of the first

search to evaluate consistency among 1,216 cases of people that died

in hospitals.

These discrepancies involved genuine differences of clinical

opinion in 42.8 percent of the cases and site errors in 57.2 percent

of the cases. (The 57.2 percent of site errors is equivalent to 24

erroneous cases out of 30 errors, corresponding to 14.3 percent of

16Ibid., p. 23.
 15

error within 210 possibilities in the records studied). ^

It is important to mention that among the 42 cases with

discrepant codes, discrepancies with the original clinical opinions

were minor, especially for patients with both chronic bronchitis and

ischaemic heart disease in which it w^^not clear which condition was

primarily responsible for admission to hospital and for death.

Alderson and Meade found that elderly patients contributed

significantly to the error group, but only those with multiple

pathology. Age, taken alone, appears to have no effect on the number

of errors. The researchers suggest that this is probably due to the

small number of cases included in the sample.

18
The Alderson and Meade conclusions were:

1. A comparison of the coding of the principal condition

treated with that of the underlying cause of death shows

discrepancies in 39 percent of the cases (more exactly,

40.0 percent, because one case equivalent to 1.0 percent

was excluded since it agreed with the original coding).

2. The proportion of errors was too large to be ignored, since

hospital in-patient reports and official mortality figures

^Ibid., p. 25. Records coded for the original admission of

patients were evaluated. For these cases, an Independent assessment
was made in which the opinion of Alderson and Meade was compared with
the original opinion, and three grades of agreement were established:
complete agreement, reasonable clinical difference of opinion, and
error.

18Ibid., p.27.
 16
9

are considered among the most important sources of

information on a nation's health.

3. Hospital diagnoses reflect underlying causes of death more

accurately than death certicates.

4. While a high degree of accuracy would improve the validity

of clinical research, as well as health and medical

statistics, the value achieved is governed almost

exclusively by those who Initiate the documents on which

the codings are based.

Alderson and Meade also underscore the need for further work in

improving the accuracy of certification, particularly in investigating

the sources of error in the cases of patients discharged from, and not

dying in, hospitals.

They conclude that:

Mortality and morbidity data continue to be used in an attempt

to Identify factors associated with disease and random error.
Increasing activity in health planning leads to a growing
demand for information which can help to make the plans
realistic and at a later stage be used to evaluate the
programs. For this purpose it is desirable to have accurate
statistics.
The study performed by Alderson and Meade provides valuable

two-way evidence to measure the degree of consistency between a

patient's underlying cause of death and a hospital diagnosis. This

research goes beyond the Initial comparison of records to examine a

sample of original clinical and hospital notes for the patients. As in

19Ibid., p. 27.
 17

the Moriyama study (1958), it presents one method to evaluate

consistency using such original clinical evidence as physicians'

notes, surgery records and autopsy results. A problem in this type of

research is the development of three separate degrees of agreement.

Using a second source of evidence, the research supports previous

research results. One limitation of this study is that only records of

patients who died in hospitals were included and patients who died

elsewhere (e.g., at home) were excluded.

In 1978 Percy and Dolman compared the cancer-related coding of

death certificates in seven countries. Their procedure was to send

identical copies of 1,246 U.S. death certificates, each with a

cancer-related diagnosis, to the vital statistics departments of the

20
seven countries that had agreed to participate in the study.

Percy and Dolman argued that significant differences exist

among countries in the application of the rules for selecting the

underlying cause of death, differences that seriously affect cancer

mortality statistics. The study also suggests that epidemiologists

studying differences in mortality rates in different geographic areas

have not been able to determine whether the differences are real or

are the result of variations in coding practices. Percy and Dolman

concluded that the more detailed rules for coding cancer diagnoses

included in the 1979 revision of the ICD will bring greater

consistency to the selection of the underlying cause of death at the

^Constance Percy and Alice Dolman, "Comparison of the Coding

of Death Certificates Related to Cancer in Seven Countries," Public
Health Reports 93(1978): 335-350
 18

international level.
21

The importance of this study is that it vas conducted after the

World Health Organization drafted some new and explicit rules which

were tested by seven countries' vital statistics systems and

incorporated later in the International Classification of Deceases.

Unfortunately, Puerto Rico's vital statistics system was not included

in this test.

Gittelson and Senning (1979) studied the reliability of death

certificates and patient records through a computer linkage of 9,724

records and certificates at the Vermont Department of Health. The

study, which covered the seven years from 1969 to 1975, was supported

by the National Center for Health Statistics' Cooperative Health

22
Statistics System.

The study linked more than 95 percent of in-hospital death

records with inpatient hospital discharge abstracts on the basis of

demographic characteristics alone. The researchers found a 72 percent

agreement between certified cause of death and medical record

diagnosis when using the first three digits of the International

Classification of Diseases coding. Agreement declined by patient age

and length of hospital stay, and varied significantly by cause of

death; for example, high three-digit agreement was observed for

21Ibid., p.337.

22Alan Gittelson and John Senning, "Studies on the

Reliability of Vital and Health Records: Comparison of Cause of Death
and Hospital Record Diagnoses,” American Journal of Public Health 69
(July 1979): 680-689.
 19

23
diabetes, cirrhosis of the liver, and congenital heart disease.

In the matched series, a neoplasm was the underlying cause of

death in 1,557 cases. Of these, 77 percent recorded the same specific

site in both the hospital record and the death certificate; 6 percent,

a different site within the same organ system; 15 percent referred to

a different organ system; and 2 percent had no hospital diagnosis of

neoplasm.

Gittelson and Senning concluded;

Since no external measure of the validity of cause or diagnosis is

available for the series, agreement levels between the two data
systems at best provide a measure of the reproducibility of
diagnostic coding on records relating to the same event and
initiated at the same source. On the other side of the coin,
nearly perfect agreement is no assurance of underlying accuracy.24

Gittelson and Senning stated in their research that the

accuracy of cancer data, or perfect agreement, is not an assurance of

underlying accuracy because it also depends on the quality and type of

source used to determine the cause of death and the clinical

diagnosis. They explained that accuracy of cancer data (even when

consistency is perfect) is greater when evidence is derived from

microscopic examination of the patient and autopsies. Accuracy might

be validated if the diagnosis and the cause of death correspond to

that stated by the original medical sources.

Percy studied the accuracy of cancer death certificates

23Ibid., p. 687.

24Ibid., p. 688.
 20

recorded In 1970 and 1971 In eight of the nine areas Included In the

Third National Cancer Survey (TNCS) of the United States. The survey

reviewed 48,826 records in hospitals in all areas of the United

25
States.

Percy based his analysis on a table in which he calculated two

different rates of consistency, what he called detection and

confirmation rates. The detection rate is defined as the number of

cases diagnosed for a particular site in both the hospital record and

the death certificate, divided by the total number of persons with

that specific diagnosis who died of any type of cancer. The

confirmation rate is the same numerator divided by the number of

deaths with that particular site given as the underlying cause of

26
death and with a previous diagnosis of that specific cancer.

The comparison of death certificates with hospital diagnoses

reveals that 86.7 percent of 30 cancer-site groups examined reported

the same cancer sites on both the hospital records and the

certificates. They further observed that when the number of cancer

categories increased from 30 to 49, overall agreement dropped to 82.7

percent. Both the detection and confirmation rates were exactly

27
equivalent to 82.7 percent.

^ C o n s t a n c e Percy, Edward Stanck, and Lynn Gloeckler,

"Accuracy of Cancer Death Certificates and its Effect on Cancer
Mortality Statistics," American Journal of Public Health, 71 (March
1981): 242-250.

26Ibid., p. 245.

27Ibid., p. 247.
 28
Results were classified la four (4) different groups:

Group 1: both high detection and confirmation rates (over

80 percent)

Group 2; both low detection and confirmation rates (under

80 percent)

Group 3: detection ra'^s higher than confirmation rates

(over-reporting on death certificates)

Group 4; confirmation rates higher than detection rates

(under-reporting on death certificates)

Percy found a specific rate of agreement of 93 percent for

cancers of the lung, bronchi, breast, and prostate, and for multiple

myeloma. Connective tissue tumors were reported among those with low

detection and confirmation rates. Malignant neoplasms of the bone

showed only a 49.6 percent detection rate and a 78 percent

confirmation rate.

Deaths coded on the death certificate as primary cancer of the

bone showed hospital diagnoses of primary cancers of many other

29
sites.

The Percy study is the most comprehensive of all investigations

discussed, in terms of the size of the population included. It

reviewed hospital records, Including autopsy and surgical pathology

reports, for all recorded cancers (incident and prevalent) in

28Ibid., p. 248.

29Ibid., p. 248.
hospitals of the area. The importance of this study is that over 90

percent of the clinical diagnoses were microscopically proven, giving

researchers a valuable scientific criterion for validating clinical

diagnoses. The research also presented a valuable large-scale

assessment of the accuracy of cancer mortality data for an entire

nation. On the other hand, this research failed to consider variations

of consistency data based on such other socio-demographic variables

as age, sex, type of physician who certified the death and others.

In 1982 Gobbato studied 1,405 patients whose malignant tumors

were revealed at autopsy in 1974 and 1978 in Trieste, Italy. His

procedure compared clinical diagnoses on death certificates with

autopsy findings; the death certificate was used instead of the

clinical record because clinical records are sometimes corrected or

30
refined according to pathologic findings.

Gobbato's research used a retrospective methodology and allowed

verification of the clinical diagnosis only in true neoplastic cases

without the possibility of ascertaining the "over-diagnosed”

(false-positive) cases. The accuracy of the clinical diagnosis was

31
assigned to one of three categories:

1. Specific concordance, when the clinical diagnosis correctly

described the site and spread of the tumor

^^Ferdinando Gobbato et al, "Inaccuracy of Death Certificate

Diagnoses in Malignancy: An Analysis of 1,405 Autopsied Cases," Human
Pathology 13 (November 1982); 1036-1038.
 2. Nonspecific concordance, when the existence of the tumor

was clinically suspected

3. No concordance, when the tumor was neither diagnosed nor

suspected

Gobbato found that 53.7 to 54.4 percent of the clinical

diagnoses in 1974 and 1978 reported on death certificates were

accurate and reliable; 20.6 to 18.1 percent were unsuitable for

epidemiologic research because they were nonspecific; and 25.7 and

27.5 percent failed to note the existence of cancer. Moreover, there

was no significant improvement in the accuracy of diagnoses from 1974

to 1978. Accuracy was highest for tumors that were easily accessible

for direct inspection (such as cancers of the skin, breast, mouth, and

testes), and lower for such internal organs and structures as the
32
liver and peritoneum.

Gobbato also evaluated the reliability of diagnoses by hospital

department, distinguishing between general surgery units and geriatric

units. He cited two reasons for the higher accuracy of general

surgery units: (1) patients who are to undergo radical surgery are

more thoroughly examined, and (2) the operation allows the surgeon to

confirm or refute the diagnosis. The low accuracy found in geriatric

units was attributed to the advanced ages of patients and the

resulting limited therapeutic perspective.

Gobatto's study represents an Innovative methodology for

studying the accuracy of the stated underlying causes of death, with

32Ibid., p. 1037.
 24

its use of autopsy. However, as Gobbato explains, despite the

usefulness of autopsy in the confirmation and interpretation of

clinical findings, the number of autopsies performed have fallen

remarkably almost everywhere in the past 20 years.

The results of the Gobbato study agree with previous research

in Italy which indicated only 54.0 percent accuracy rate between

diagnoses and cause of death statements. The study

pointed to accuracy variations in clinical diagnosis depending on

tumor sites and the ages of the patients. His research demonstrates

that increasing age is associated with less specific agreement of

records.

More recently Davesa, Pollack and Young (1984) studied the

validity of observed cancer incidence trends in Atlanta, Detroit, San

Francisco-Oakland, Iowa, and Connecticut. The data were examined for

several primary sites by area and by age and were compared with cancer
33
mortality data in these areas and throughout the country.

The information used by Davesa was obtained from the National

Cancer Institute's Surveillance, Epidemiology and End Results Program

(SEER), which currently uses data from four cities and five states.

The five areas Included in the 1984 study make up some 72 percent of

the entire SEER Program population, and between six and seven percent

33Dave8a, Pollack, and Young, "Assessing the Validity of Observed

Cancer Incidence Trends,” American Journal of Epidemiology 119 (1984):
274-291.

L
 34
of the total current U.S. population.

To provide information on the completeness and accuracy of data

reported from various sources, Davesa calculated the percentage of

cases reported by death certificate only and the percentage that were

histologically confirmed for each area and time period.

Davesa explained that:

The cancers reported only by death certificates may represent cases

missed in the ascertainment process.... Within each geographic area
a considerable variation in the percentages was reported among the
organ systems, but no area consistently had the highest proportion
reported by death certificate only.... On the other hand, the
proportion of cases with histologic confirmation was used as
another indicator of completeness and accuracy, which means the use
of pathological and microscopic examination of tissue.33

The study examines available cancer Incidence data from 1940 to

1984 for seven primary sites: lung, stomach, colon and rectum,

prostate, breast, uterine corpus and uterine cervix. It also

identified apparent changes In incidence by comparing incidence trends

with corresponding mortality trends and also assessing the consistency

of incidence trends among age groups and among geographic areas.

Davesa concluded that percentages of incident cases reported by

death certificate only were considerably lower for recent periods than

they were at the earliest time period. For geographic areas, they

found considerable variation in the percentages of Incidence among the

3^The Puerto Rico Cancer Registry Information System is part of

the SEER Program, every year the computer files of all new cases are
mailed to the United States Health Department.

35Ibid., p. 277.
organ systems. They also finally concluded that percentages of cases

with histologic confirmation (ranging from 54 to 95 percent) were

lower for the late 1940's in comparison to the most recent time period
36
(85 percent to almost 100 percent).

The results of the comparison of incidence and mortality trends

expressed in graph form show parallels between stomach cancer and

cervical cancer data. Incidence rates for both types of cancer

demonstrate an overall significant decrease. The incidence rates for

colo-rectal cancer and prostatic cancer have increased, while the

mortality rates have remained relatively stable. Trends in incidence

and mortality rates were most discrepant for breast and uterine corpus

cancers.

The limitations of this research are due to possibile changes

in survival rates. Such changes could alter mortality rates regardless

of changes in cancer incidence rates. Improvement in cancer treatment

techniques may increase the survival rates for specific sites and may

change mortality trends. On the other hand, it is difficult to prove

whether the divergence of incidence and mortality rates are due to

increased survival rates or whether increases in incidence rates may

be due to improvement in detection procedures, expansion of medical

care systems, or a real change in the presence of risk factors.

Finally, the study pointed out that completeness and accuracy

of data depend more on the procedures used, training of personnel,

relative intensity of case finding, and quality control in the

36Ibid., p. 277.
particular program, than on whether a survey or an ongoing program
37
generated the data.

The Davesa research is very important because of the use of a

different methodology to measure the accuracy of cancer data. The

unique feature of this research Is that It compares only Incidence

cancer data with cases diagnosed during a significant number of years.

It also compares incidence trends with mortality data. Calculated

rates are expressed as average annual rates per 100,000 population and

plotted on semilogarithmlc graphs. As explained previously, this

research did not compare direct data, using underlying cause-codifled

and diagnosis of clinical records.

Research to measure consistency of cancer as the cause of death

stated on the death certificate with a previous clinical diagnosis has

never been done in Puerto Rico. A study conducted by Garcia Palmieri

(1964) measured consistency between clinical records and death

certificates exclusively for data related to coronary heart

38
disease.

The purpose of Palmieri's research was to determine whether

Puerto Rico'8 low rate of coronary disease was caused by

under-reporting through analysis of death certificate data for

specific age groups according to the following factors:

37ibid.

38Marlo R. Garcia Palmieri et al, "Coronary Disease

Mortality: A Death Certificate Study," Journal of Chronic Disease 18
(1965): 1317-1323.
 1. Whether an autopsy had been performed

2. Whether the patients died In hospitals

3. Whether the patients had been attended by the certifying

physicians

4. Whether deaths had been certified by a relative or friend

of the deceased.

Using the information collected in the study, a participating

physician wrote new certifications of the causes of death. The

information then was given to a second physician for second

independent evaluations and certifications. The certainty of the

diagnoses was graded "almost certain," "reasonably sure," "doubtful,"

or "unable to diagnose."

From a total of 674 deaths occurring during a six-month period

from May 1963 to October 1963, 94 cases were coronary heart disease

(CHD) cases. From this total, 48 cases were "almost certain" in their

death certification, equivalent to 51.1 percent; 33 cases were

"reasonably sure," representing 35.1 percent; and 13 cases, or 14.0

39
percent, were of "doubtful" codification.

Garcfa Palmieri concluded that the lower mortality rate of CHD

in specific age groups persists. It was possible to verify 84 percent

of the deaths, indicating a relatively high degree of reliability in

the establishment of the cause of death.

Garcia Palmieri found that:

the less reliable the source of Information, the greater the

proportion of cases with change in diagnosis. Autopsy cases

39Ibid., p. 1318.
 have the least proportion of changes, because the certifying
physician was usually the pathologist who performed the autopsy
and changes were registered only when the microscopic
examination differed from the gross findings.... The fact that
the death certificate diagnosis for CHD could be verified with
an autopsy, hospital record or physician's record in 84 percent
of deaths is also a manifestation of a relatively high degree
of reliability in the establishment of the cause of death.

^Ibid., p. 1322. The data are considered most reliable when

the diagnosis is made using an autopsy record, a copy of the protocol
is included, and a pathologist interview is performed. The source of
information is considered less reliable when the certification is made
only on the basis of information gathered through interviewing
relatives of the deceased and none of the sources mentioned above is
used for the diagnosis.
 30

Conclusions

The studies cited in this chapter showed that one way to

evaluate the accuracy or exact correspondence of cancer mortality

statistics and clinical data is to measure the consistency between the

causes of death as stated on death certificates and diagnoses from

hospitals and physicians. This procedure may help to determine the

adequacy of death records in reporting causes of death.

Prior research on this issue points to many differences in the

various populations chosen for study. Some studies represent a total

universe of population records and others study only samples. There

are also marked differences in techniques and procedures used to

analyze data.

The studies by Crawford and Phillips (1962), Gittelson and

Senning (1979), Alderson and Meade (1967), Percy (1981) and Gobbato

(1982) might be considered as the most complete in terms of the

numbers of cases and length of time periods considered in the

analyses. Studies performed by Moriyama (1958) and by Bonser and

Thomas (1959) used only population samples, failing to explain the

methodology followed in obtaining the samples. Of the studies using

population samples, only the Davesa study (1984) gave an explicit

description of the sample.

The Crawford and Phillips research (1962) is a pioneer in

providing a way to measure the completeness of vital statistics

systems for recording deaths and clinical diagnoses. However, this

study does not analyze total consistency between records or use

socio-demographic data variables.

The Moriyama (1958) and Gobbato (1982) studies are important in

furthering knowledge of techniques to measure accuracy of data. Both

of these used retrospective methodology to evaluate the original

sources used to establish the clinical diagnosis. The Moriyama study

is significant for his method of qualifying clinical data into

categories. Gobbato’s research checked the quality of physicians'

diagnoses through the use of autopsy records.

Alderson and Meade (1967) and Gittelson and Senning (1979)

might be considered the first investigators to introduce other

variables to the analysis of data, hypothesizing that discrepancies

between clinical diagnoses and causes of death are associated with

such variables as the type of hospital admitting the patient and the

patient's age.

The investigation by Percy, Stanek and Gloeckler (1981) goes

beyond measurement of the quality of information in its very

comprehensive study. Besides measuring data consistency by specific

cancer sites, it also used a retrospective technique to evaluate

diagnoses, examining autopsies and surgical pathology reports. The

value of this research is immeasurable, since the reports assess

consistency of data at national levels, and also consider consistency

variations by socio^demographic data.

The Davesa study (1984) presents an Innovative method of

analyzing and evaluating cancer data, limiting research to a

comparison of incidence data of new cancer cases by year and mortality

trends. It also Introduced graphic techniques to analyze the results.

 The research done in other countries allows us to bring a

variety of perspectives to bear on our own analysis of the consistency

of cancer statistics in Puerto Rico. From these, we have developed an

approach and methodology to measure the consistency of cancer data in

Puerto Rico, combining some of the features of previous research and

introducing our own.

That is, since the majority of previous research showed the

importance of measuring consistency of both original clinical records

and death statements on death certificates, we included original

clinical data collected by the Puerto Rico Cancer Registry and all

deaths recorded as cancer deaths on death certificates of the

Demographic Registry of the Health Department for 1980 and 1982.

As the Cancer Registry has already collected and computerized

diagnosis data from hospital and physician sources, we can assess the

diagnoses and their medical bases, gaining a valuable medical

perspective. These data sources help shape our study and go beyond the

perspectives of prior research.

While some of the previous studies attempted to include other

variables in their accuracy analyses, such as age, sex and type of

hospital at which death occurred, among others, each of these studies

limited these to only one or two socio^demographic variables. At this

point, it is uncertain how much effect such variables may have on

consistency of data. We understand that various additional factors

must be included to effectively analyze cancer statistics. Our

research design includes ten (10) different variables, which are

specified in Chapter V.
 33

This study attempts to aid in the understanding of the

importance of dealing with certain factors that pertain to the

exactness of cancer data. We hope this project may help to delineate

an appropriate methodology for future evaluation of cancer data. The

inclusion of various tabulations described in Chapter V and presented

in Chapter VI provides proper criteria for implementing monitoring

procedures for improving the quality of mortality and prevalence

cancer data.

The description of the relationship of the variables selected

to evaluate the association with consistency may help cancer program

personnel and physicians to be conscious of the Importance of

precision in reporting, collecting and codifying data. For a more

comprehensive review of the research rationale, see Chapter V.

 CHAPTER II

SOURCES OF CANCER DATA IN PUERTO RICO

The two sources of cancer data in Puerto Rico are the Central

Cancer Registry, which collects information from patient records, and

the Puerto Rico Demographic Registry, whose role is the registration

of vital statistics including births, deaths, marriages and divorce

decrees.

The Cancer Registry's main objective is to provide data for

scientific research by collecting, processing, and analyzing

information on cancer patients, and publishing the resulting

statistics. Its information is usually much more complete than the

data included on the death certificate, because a patient's clinical

record may Include biopsy and autopsy reports, the death certificate,

a follow-up form, a clinical abstract, and a description of the extent

of the disease. The Cancer Registry abstract coding form lists 79

variables, including socio-demographic and disease-related items,

while the death certificate lists only 38 items. A copy of the

abstract coding form (CC-4) and copy of the death certificate are

included in Appendices A and B, respectively.

34
 35

The Cancer Registry

c History

In November 1949, Dr. Lyndon Lee, Director of Cancer Control

for the Puerto Rico Department of Health, and Dr. E. Cuyler Hammond,

Director for Statistical Research of the American Cancer Society,

conducted a survey of the major hospitals in Puerto Rico as the first

step toward planning the best means of dealing with cancer on the

Island. The Division of Cancer Control concluded that a formal cancer

survey should be conducted and a permanent Cancer Registry

established. With the help of experts from the American Cancer Society

and the United States Public Health Service, this work began in June

1950. Seventy hospitals were visited, and an abstract was made of the

records of each cancer case in these hospitals from January 1, 1948 to

June 1950. These cases — some 5,000 in all — were included in the

permanent records of the newly established Cancer Registry, though in

later years all cancer cases diagnosed before 1950 were eliminated.

On March 20, 1951, the reporting of cancer cases became

compulsory with the enactment of Act 28, effective January 1, 1952,

and later amended by Act 17 of May 13, 1953. Act 28's Statement of

Motives reads:

Cancer ranks fifth among the causes of mortality in Puerto Rico,

and is constantly increasing at such a pace that it will shortly
become the third cause of mortality among the population. Both
public and private agencies are making great efforts to learn more
about its causes, prevention and treatment, so as to fight the
disease more effectively. Knowledge of the epidemiology of cancer
is most important in furthering research and the best way

C
(
 to obtain this knowledge is through reports on cancer cases, when
these occur.

Organization and Location

The Cancer Registry is currently headed by Dr. Isidro Martinez

who was appointed in January 1961. The Program is divided into the

following sections: Central Cancer Registry and Epidemiology, Cancer

Detection, Public Education, Professional Education, Tumor Clinics and

Conferences, Research Studies, and Administration. Its facilities for

diagnosing and treating cancer are located throughout Puerto Rico.

Activities

The four basic functions of the Central Cancer Registry are to

collect, process, analyze, and publish data on the distribution and

progress of all cancer patients in Puerto Rico. These statistics have

been used to investigate the medical and epidemiological problems of

the disease, to plan cancer control activities, to orient professional

and public education programs, and to search for leads in clinical and

epidemiological research.

Puerto Rico is divided into three zones for the purpose of

cancer patient referrals to University Hospital, the Oncologic

Hospital of San Juan, Ponce's Oncologic Clinic, and the public medical

centers and regional hospitals. Private general hospitals provide

primary treatment to 43.6 percent of new cancer cases; cancer

^Puerto Rico Department of Health, Central Cancer Registry,

Annual Report of Cancer in Puerto Rico; Incidence, Probability,
Mortality and Survival 1950-1964, p. 24.
hospitals, to 23.6 percent; public hospitals, to 31.2 percent. The
42
remaining 1.6 percent of the cases receive treatment abroad. Also,

the Puerto Rico Department of Health Cancer Control Program has

conducted the Puerto Rico SEER Program since 1973.

Objectives

The objectives of the Puerto Rico Central Cancer Registry SEER

Program are the following:

General objectives:

1. To record and carry out an annual survey of cancer on the

Island, providing complete and accurate incidence reports

and updating 90 percent of each year's active cases

2. To make survival data available to hospitals and physicians

for research, teaching, or administrative purposes

3. To collaborate in epidemiologic research

Specific objectives:

1. To identify, abstract, edit, and report all cancer cases

diagnosed in Puerto Rico (except squamous cell and basal

cell carcinoma of the skin)

2. To maintain active follow-up of at least 80 percent of all

active cancer cases

3. To measure and improve the quality of the Registry's data,

with particular emphasis on improving the quality of

medical care given to the patients

^2ibid., p. 26.
 38

4. To analyze cancer Incidence data and its relation to

specific areas of the Island and the differing clinical

conditions of patients in order to carry out or contribute

to the carrying out of socio-cultural, occupational,

epidemiological and other relevant research

5. To provide cancer data to physicians, hospitals, regional

health agencies, health educators, and such organizations

as the American Cancer Society, the League Against Cancer,

Lucha Contra el CAncer, and schools of medicine, public

health, and dentistry; to provide data for analytical

interdisciplinary epidemiological or clinical studies to

the schools of medicine and oncology and research hospitals

6. To analyze the factors influencing the survival of cancer

patients in Puerto Rico and abroad

7. To provide data from short-* and long-term evaluation of

cancer control programs

8. To contribute through the SEER Program to national and

international agencies interested in Puerto Rico cancer data

In addition, the Central Cancer Registry, in coordination with

the Comprehensive Cancer Center of the University of Puerto Rico

School of Medicine, contributes to research projects aimed at

improving the detection, diagnosis, and treatment of breast cancer in

women, and the rehabilitation of the patients. It also works toward

improving the referral system for treatment of cancer patients.^

^Information was obtained by interviews.

 39

Procedures

The Central Cancer Registry collects Information on all cancer

cases diagnosed and/or treated in Puerto Rico. The data are collected

in ten hospital tumor registries, the records departments of 96

general hospitals, and 195 private physicians' offices. In addition,

copies of the reports issued by 46 pathologists are recorded along

with copies of all death certificates from the Demographic Registry

mentioning cancer as a cause of death. A systematic search is made of

the records of six radiotherapy departments in both government and

private hospitals and information is reported to the Registry.

Follow-up information on all living cases is collected from all of the

medical institutions mentioned above, through telephone calls, mail

and home visits to patients. Cancer cases diagnosed since 1976 are

coded according to the ICD-O, ninth revision of 1976.

Patient Clinical Abstract

The clinical abstract includes basic demographic data, history

of previous tumors, method of diagnosis, extent of disease, type of

treatment, outcome of the patient, and follow-up. The patient's record

may also contain copies of the biopsy report, autopsy protocol, and

death certificate, plus photocopies of medical history, medical

examination, and treatment procedures.

In addition, the Registry's computer can generate both routine

and special reports. For instance, Information on cases diagnosed from

1969 to 1972 was sent to the Biometry Branch to be included in the

Third National Survey. Cases diagnosed from 1973 to 1975 were sent to
Che SEER Program, following the SEER format. Cases from 1976 Included

the Expanded Extent of Disease (EEOD) coding for cancer of the breast,

colon, and rectum, the two-digit EEOD for other specific sites, and

other information for all sites. Cases from 1977 are now being coded,
44
including the EEOD for melanomas and lymphomas.

The Central Cancer Registry also provides information useful

for:

1. Planning all cancer control activities of the Cancer

Control Program

2. Educating physicians through follow-up of cancer cases

3. Evaluating cancer detection programs

4. Providing data on cancer inPuerto Rico for local use every

year, for the National Cancer Survey, and for cancer

programs on five continents

5. Providing data for epidemiologic studies in Puerto Rico and

abroad

The Central Cancer Registry collaborates with the National

Cancer Institute in comparing data on cancer in Puerto Rico with data

from other SEER Program areas and from the rest of the world. This

comparison permits research into environmental or other factors

associated with cancer.

^Personal interview with Ms. Raquel Torres, Director, Cancer

Registry, Puerto Rico Department of Health, September 12, 1983.
Completeness

The Registry carries out a series of activities to assess the

efficiency and completeness of cancer records in Puerto Rico:

1. Semi-annual pathology laboratory checks

2. Listings of pathology reports to complete abstracts.

Listings are prepared every two or three months, and a

cumulative abstract is issued every six months

3. Copy of each new death certificate mentioning cancer

4. Monthly follow-up of active cancer cases

5. Annual matching of all new death certificates listing any

cause of death with Registry active cases

6. Annual check of discharges from all institutions

7. Annual check of radiotherapy department admissions books

Quality Control

The quality of the data is checked as follows:

1. By verifying: double-checking of pathology laboratories,

re-abstracting by Registry or SEER personnel

2. By editing: checking for duplicates, checking for

completeness and correction of information

3. By coding: reviewing every case coded

4. By punching: verifying every card punched

5. By computerizing: editing for corrections, checking for

inter-field inconsistencies
 The Demographic Registry

The registration of vital events in Puerto Rico Is performed by

86 registries under the Department of Health's Health Facilities and

Services Administration. Every month records are sent from the local

level to the Central Registry, where they are processed and filed, and

where certified copies are issued and legal amendments performed.

Funeral agents are responsible for recording, based on

information from relatives or medical records, the sex, age, date of

birth, race, and marital status of the deceased, and the location of

death, among other items. The medical certification of death may be

made only by a qualified person, usually a physician, medical

examiner, or coroner. Some exceptions to this procedure are cases in

which the deceased was elderly or died in an accident; in these cases,

a district attorney certifies the death.

Each local registrar inspects certificates for completeness and

accuracy. When information is missing or appears incorrect, he is

responsible for having the funeral agent correct it. The registrar

signs and sends the completed record to the central office of the

Demographic Registry.

The Flow of Records

The Registration Section

The Registration Section processes some 150,000 records a year;

130,000 vital events for the current year, plus 20,000 supplementary

documents. The records are certificates of live births, deaths, fetal

 43_
t

deaths, and marriages, as well as divorce decrees. This section also

handles legal acknowledgments of offspring, legal emancipations of

minor children, and adoptions. As soon as records are received in the

Section, a person in charge of receipt and control verifies the total

number of records against a card sent by the local registries and

cards corresponding to the previous month. The cards are numbered

sequentially, and the records are placed in files for a dally

distribution to other units.

Information Control Unit

This unit checks all the certificates received each month from

the local registries to ensure that no record is missed. The records

are numbered sequentially, sent to the computer center for processing,

and used in microfilm transmittals to the National Center of Health

Statistics for a monthly preliminary vital statistics report.

Review Unit

This unit reviews records for completeness and consistency of

information, and inquires about and corrects any errors. It also

matches infant death certificates with the corresponding birth

certificates.

Coding Unit

This unit's activities include;

1. Coding live births, deaths and marriage certificates

 44

2. Coding causes of death on death certificates according to

the ICD, ninth revision.

3. Reviewing and inquiring about causes of death

4. Reviewing and correcting error lists generated from edits

of live births, marriages, and death certificates sent by

the computer center

5. Completing, correcting and sending a special form to the

Computer Center for update after correcting errors in it.

The New Death Certificate

In January 1979 the Puerto Rico Health Department implemented a

new death certificate form, listing more items than the previous

certificate. The new document has allowed the Health Department to

comply with all items required under the Cooperative Health Statistics

System of the federal government.

According to offices of the Demographic Registry, the

implementation of the new document required modification and new

controlling and querying techniques. A data control report was

established to measure completeness and consistency of items listed.

For example, before the new certificate, sequential numbering of

records was done by inscription year rather than by year of

occurrence, which created problems in handling records at both the

Federal Center and at the local level. In January 1981, numbering by

year of occurrence was Implemented and approved by NCHS advisers. TWo

forms were implemented for use by technicians to specify which

certificates were to be retained and which were to be removed from

 45

files at local levels. Also, the policy emphasizing detailed and

accurate manual inspection of all vital records was reinforced.

However, in 1980 offices of the Cooperative Health Statistics Systems

in Puerto Rico reported that the procedures ensuring the quality of

records remained flexible, and the situation created certain

difficulties in attempts to monitor the flow and completeness of data

collection activities.
 46

Conclusions

The Cancer Registry's data are usually much more complete than

the data from death certificates. The information collected by the

Cancer Registry Includes biopsy and autopsy reports, follow-up forms,

clinical abstracts and descriptions of the extent of the disease.

The objectives of the Puerto Rico Central Cancer Registry seems

to be more research-oriented than the objectives and performance of

the Demographic Registry. The Central Cancer Registry analyzes cancer

incidence data in order to contribute to research and to measure and

Improve the quality of its data. However, there is scarce evidence to

demonstrate that Puerto Rico's Demographic Registry is using vital

statistics to perform any analytical studies for public policy

purposes.

A conspicuous feature of the Demographic Register is that it

processes some 1,500,000 records a year, while the volume of records

processed by the Cancer Registry Is much lower, around 6,000 to 7,000

records per year.

Also it is necessary to note that after the implementation of a

new death certificate form, the administrative activities and

technical efforts doubled, and more intensive attention was given to

new controlling and inquiring procedures than to research activities.

However, the Demographic Registry seems to be entering a new phase and

authorities expect future research activities will increase in

importance and in magnitude.

c CHAPTER III

MORTALITY TRENDS, CANCER MORTALITY AND CANCER INCIDENCE IN PUERTO RICO

Analysis of mortality data and of various causes of death

provides a national socio-economic population index. Since mortality

rates, among others, are indicators of progress in terms of life

expectancy, they provide a way to anticipate early death and serve as

a measure of the degree of adequacy of government sanitary programs

and improvements in the public health systems. Other indicators of

progress may also be measured in terms of improvements in the

"quality” of life, as shown, for example, by reductions in the

incidence of accidents and injuries, in the incidence and prevalence

of morbidity, mental illness and physical disability and others.

Declines in mortality may also result from the adequacy of educational

programs, improved communications and the administrative and economic

infrastructure of a country. Unfortunately, health conditions and

mortality rates throughout the world have been improving only very

slowly. It has been argued that one important reason for this is the

inadequate organizational structure of health services and their

emphasis on curative, hospital-based care, rather than on prevention.

In Puerto Rico, the mortality rate dropped from 18.4 per 1,000

inhabitants in 1940 to 9.9 in 1950 (see Table 1). Up to 1940, 50.0

percent of deaths were caused by parasitarlosis and infectious

diseases. After 1940 death caused by these diseases dropped, while

47
 TABLE 1

GENERAL MORTALITY RATES

PUERTO RICO, 1940 TO 1982

GENERAL MORTALITY
YEAR POPULATION NO. RATE*

1940 1,878,000 34,477 18.4

1945 2,049,000 28,886 14.1
1950 2,218,000 21,917 9.9
1955 2,250,000 16,243 7.2
1960 2,360,000 15,841 6.7
1965 2,583,000 17,719 6.9
1970 2,721,700 18,080 6.6
1971 2,779,300 18,144 6.5
1972 2,865,100 19,011 6.6
1973 2,872,300 19,257 6.7
1974 2,890,000 19,490 6.8
1975 2,938,800 19,073 6.5
1976 3,018,300 19,893 6.6
1977 3,074,100 19,985 6.5
1978 3,121,600 19,876 6.4
1979 3,160,700 20,390 6.5
1980 3,206,300 20,530 6.4
1981 3,246,800 21,197 6.5
1982 3,263,300 21,523 6.6

Source: Puerto Rico Department of Health, Vital Statistics Report,

Summary Table, 1983.

*Rate per 1,000 inhabitants

deaths caused by chronic and degenerative diseases increased

significantly. Mortality rates continued to decline slowly, reaching a

rate of 6.7 by 1960. Since then, the rate has been almost

stationary,decreasing to 6.4 in 1980 and rising slightly in 1982, to

45
6.6 per 1,000 Inhabitants.

The leading cause of death in Puerto Rico in 1977 was heart

disease with a rate of 161.0, followed by cancer and cerebrovascular

diseases, with rates of 92.4 and 51,7, respectively (see Table 2). In

1982 death by heart diseases increased significantly to 181.2, cancer

death registered a consistent increase up to 1981, with a slight

decline in 1982. In general, cardiovascular diseases declined in these

years with the exception of 1981 in which a drastic increase in the

number of deaths was reported.

In mortality differentials, Puerto Rico follows the same

tendency as the majority of countries of the contemporary world:

mortality rates are higher for males than for females. Mortality rates

are reversed in men and women only in communities where women have a

low social status and where maternal mortality is high. Several

studies have tried to determine if high mortality for men is related

to biological factors or life style differences, but the reason for

46
the phenomenon is not yet clear.

The pattern of higher mortality for males has been historically

^Puerto Rico Department of Health, Annual Report 1982, p. 9.

^Jos€ l . Vfizquez Calzada, La Poblaci6n de Puerto Rico y su

Trayectorla Histdrica [The Population of Puerto Rico and its
Historical Trajectory] (Unlversldad de Puerto Rico Rio Piedras, 1978),
pp. 209-239.
 50

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sustained on the Island since 1867, the time for which data are

available. For this year the male mortality rate was 30 deaths for

each 1,000 Inhabitants and the rate for females was 27 per 1,000
J ►k
deaths. A7

"From 1960 to 1969, the mortality rate for males was 33.0 percent
higher than the female rate and 46.0 percent higher from 1970 to
1976. This means that the decline In the female mortality rate was
faster than for that of the male. As a matter of fact, the decrease in
male mortality from 1900-09 to the period of 1970-76 was 70 percent;
for females it was 79 percent.”A®

A similar pattern is observed in previous years (1980 to 1982), In

which the male rate varies between 7.6 to 7.8 and the female rate,
49
from around 5.2 to 5.5 (see Table 3).

Mortality has also been associated clearly with age. It is high in

the first year of life and declines consistently up to a point at

which it begins to increase progressively. In general, Puerto Rico’s

decline by age specific rate occurred dramatically between 1940 and

1950, especially among the age groups of 1 to 9 years. Thedeclinefor

the groups of 75 years and over, however, was lower. ^

For 1980 and 1982, mortality was high in the first year of life and

then declined up to the age group of 20-24 years, when it began to

increase constantly as age increased to a maximum (see Tables 4 and 5).

A7Ibid., p. 210.

A8Ibid., p. 210.

A9Ibid., p. 211.

5 0 Ibid., p. 211.
 52

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Considering the age factor by sex, It Is observed that In 1980 among

males the Increase began early and markedly In the age group of 15-19,

and for females the increase began late in the age groups of 35-39.

Differences in rates by age groups and by sex are observed for the

group of 85 and more years and for the group of 75-79 years of age.

For the group of 85 years or more, the rate was high for females at

308.5 and 195.9 for males. For the group of 75-79 years, it was 89.0

for males and 58.6 for females. These differences are equivalent to

112.6 and 30.4 percentage points, respectively.

Cancer Mortality Differentials in Puerto Rico: 1980 and 1982

Historical mortality data collected in Puerto Rico show that

cancer officially caused only 2 percent of all deaths in 1931 (see

Table 6). By 1940 the cancer mortality rate had increased to 3

percent, and by 1950 to 6 percent. The rate increased dramatically to

12 percent by 1960 and, in 1970, settled at 15 percent, remaining

virtually stable since that time.

The proportion of cancer deaths per 100,000 inhabitants was

42.6 in 1931, 102.7 in 1980, and 100.8 in 1982. By this time cancer

had become the second highest cause of death in Puerto Rico.

Age

Cancer rates for 1980 and 1982 are highest for the age group of

5 to 9 years of age within all the ages from of less than one year to

20 to 24 years. Moreover, it demonstrates also that mortality rates

from cancer increase consistently as age increases after 24 years of

age (see Table 7). It has been suggested by prior research that this
^ TABLE 6

CANCER MORTALITY RATES

PUERTO RICO, 1931-1982

YEAR NUMBER RATE* PERCENTAGE TOTAL DEATHS

1931 676 42.6 2.0 36,146

1932 724 44.8 2.0 35,610
1933 746 45.2 2.0 36,763
1934 776 46.1 2.0 31,703
1935 841 49.0 3.0 30,753
1936 883 50.5 3.0 34,788
1937 863 48.5 2.0 37,132
1938 936 51.7 3.0 33,870
1939 988 53.6 3.0 32,631
1940 971 51.7 3.0 34,477
1941 1,035 54.1 3.0 35,551
1942 1,065 54.7 3.0 32,218
1943 1,005 50.8 3.0 29,065
1944 1,048 52.0 4.0 29,843
1945 993 48.5 3.0 28,886
1946 1,006 48.3 3.0 27,570
1947 1,158 54.7 5.0 25,411
1948 1,222 56.8 5.0 26,204
1949 1,348 61.7 6.0 23,391
1950 1,304 58.8 6.0 21,917
1951 1,411 63.1 6.0 22,371
1952 1,435 64.4 7.0 20,504
1953 1,385 62.8 8.0 17,966
1954 1,482 66.9 9.0 16,871
1955 1,592 70.8 10.0 16,243
1956 1,692 75.2 10.0 16,607
1957 1,750 74.4 11.0 16,022
1958 1,821 79.2 11.0 16,099
1959 1,833 78.9 12.0 15,870
1960 1,975 83.7 12.0 15,841
1961 2,132 88.8 13.0 16,361
1962 2,019 82.5 12.0 16,575
1963 2,180 87.5 13.0 17,386
1964 2,153 84.7 12.0 18,556
1965 2,216 85.8 13.0 17,719
1966 2,413 92.4 14.0 17,506
1967 2,339 88.8 14.0 16,780
1968 2,420 90.8 14.0 17,481
1969 2,494 92.2 14.0 17,669
1970 2,658 97.9 15.0 18,080

<
 TABLE 6 (Cont’d)

CANCER MORTALITY RATES

PUERTO RICO, 1931-1982

YEAR NUMBER RATE* PERCENTAGE TOTAL DEATHS

1971 2,618 94.3 14.0 18,144

1972 2,685 93.6 14.0 19,011
1973 2,597 88.0 13.0 19,257
1974 2,860 94.4 15.0 19,490
1975 2,854 91.5 15.0 19,073
1976 2,852 88.5 14.0 19,893
1977 3,068 92.4 15.0 19,895
1978 3,200 95.3 16.0 19,876
1979 3,088 98.0 15.0 20,370
1980 3,285 102.7 16.0 20,486
1981 3,343 103.1 15.8 21,197
1982 3,296 100.8 15.0 21,522

Source: Puerto Rico Department of Health, Vital Statistics Report,

Summary Table, 1982.

*Rate by 100,000 inhabitants.

 TABLE 7

RATES OF CANCER DEATHS BY

AGE GROUPS 1980 AND 19821

r...
Age 1 Pop. 1980 1 Deaths j Rate Pop. 1982 Deaths 1 Rates

72,900 1 4.11 73,353 I

1 1 1 3
1-4 | 284,600 1 15 1 5.27 275,109 4 1 1.45
5-9 1 358,800 1 19 1 5.29 337,904 20 1 5.91
10-14 | 365,700 1 14 1 3.82 346,046 15 1 4.33
15-19 I 347,500 1 17 1 4.89 344,863 17 1 4.92
20-24 I 301,700 1 12 1 3.97 278,676 10 1 3.58
25-29 | 245,400 I 20 1 8.14 241,549 27 1 11.17
30-34 I 199,600 1 41 1 20.54 235,029 40 1 17.01
35-39 I 172,300 1 59 1 34.24 198,738 61 1 30.69
40-44 i 153,600 I 94 1 61.19 169,450 80 1 47.21
45-49 | 140,000 I 123 1 87.85 148,345 120 1 80.89
50-54 | 125,500 1 191 1 152.19 132,761 172 I 129.55
55-59 1 111,400 I 255 I 228.90 122,278 303 I 247.79
60-64 1 96,400 1 377 1 391.07. 107,341 345 I 321.40
65-69 | 79,500 I 471 I 592.45 96,711 459 1 474.60
70-74 | 58,800 I 473 I 804.42 66,981 503 I 751.96
75 or morel 85,600 1 1,101 11286.21 94,666 1,115 11177.82
Unsp. 1 — 1 — 1 — — 4 1 —
Total 1 3,199,300 1 3,285 1 102.67 3,269,800 3,296 I 100.80

Source: Puerto Rico Department of Health, Vital Statistics Report,

1980 and 1982.

1 Rates per 100,000 inhabitants.

Increase In mortality rates Is due to Increases In age-specific rates.

However, studies In the United States suggest that after

adjusting for changes in age distribution, rates increased constantly

at about 2% per annum in the 1970’s . ^

Other evidence points to the Increase in incidence of most

human cancers with the fourth, fifth, or sixth power of age. These

patterns are easily understood in terms of multi-stage models.

"Multi-stage models give a very natural explanation for cancer

being a hundred times rarer among young adults than among the
elderly, but no plausible explanation has yet been offered for
the fact that the risk of cancer in old age is not different in
other species with very different life spans.”52

Specific Sites and Sex

Studies of national and international variation in cancer

mortality data have been used to formulate hypotheses about the

influence of causal factors in differences appearing in incidence

rates for specific malignancy sites. Dietary and lifestyle patterns

are considered key factors in explaining both the wide differences

found in various parts of the world and changes in rates by cancer

site.

In 1984 Rosenwaike explained that for Puerto Ricans living in

the U.S. mainland, cancer experience more closely resembles the

Japanese pattern, rather than the European or the North American

^U.S. Department of Health and Human Services, National

Center For Health Statistics; Social and Economic Implications of
Cancer in the United States, Hyattsville, Md., (1981), p. 23.

^ A m e r i c a n Cancer Society, Cancer Facts and Figures, A.S.C.,

New York, (1973), p. 21.
 60

pattern. Like the Japanese, Puerto Ricans have higher standardized

mortality ratios compared with U.S. whites for stomach, esophagus and

cervical cancers and low rates for most other cancer sites.^

It has been speculated that numerous dietary incluences may be

associated with the relatively high levels of gastric cancer mortality

among Puerto Ricans in the U.S. It has been suggested that the

dietary habits related to colon and rectal cancer mortality are

high-fat consumption, principally from meat, high cholesteral

consumption and low fiber intake.

Rosenwaike also mentioned that alcohol consumption and smoking,

among other factors, have been implicated generally as risk factors

for esophageal cancer. The high level of alcohol consumption in Puerto

Rico may explain the elevated mortality rates for cancer of the

esophagus (especially among males) compared with the rates for U.S.

population. Clearly, the distinct lifestyles of Puerto Ricans present

an opportunity to investigate the relationship of dietary patterns and

other environmental factors to incidence of cancer in the population

and cancer specific causes of death.

Data for 1980 and 1982 for Puerto Ricans living on the Island

show that cancer deaths were also led by cancer of the digestive

organs, with an overall rate for 1980 of 32.6, and for 1982, of 36.2

(see Tables 8 and 9). Cancer of the genito-urinary organs (Code

170-189.9) was the second cause of cancer deaths, with an overall rate

53 ira Rosenwaike, "Cancer Mortality Among Puerto Rican-born

Residents in New York City," American Journal of Epidemiology 119
(1984): 177-185.
 TABLE 8

CANCER MORTALITY RATES BY SPECIFIC SITE AND SEX

PUERTO RICO, 1980

MALIGNANT TOTAL MALES FEMALES

NEOPLASM CODE NUM. RATE* NUM. RATE* NUM. RATE*

OTAL 140-2089 3,285 102.7 1,961 125.1 1,325 81.1

Lip, oral cavity

and pharynx 140-N1499 154 4.8 118 7.5 36 2.2

Lip 140
Tongue 141 36 1.1 29 1.8 7 .4
Salivary Glands 142 1 1 .1
Gum 153 3 .1 3 .2 — —

Floor of Mouth 144 2 .1 1 .1 1 .1

Other 145 16 .5 12 .8 4 .2

Pharynx 146-1489 23 .7 17 1.1 6 .4

Oral and ill

defined Sites 149 73 2.3 55 3.5 18 1.1

Digestive organs
and peritoneum 150-1599 1,043 32.6 661 42.2 382 23.4

Esophagus 150 224 7.0 173 11.0 51 3.1

Stomach 151 299 9.3 210 13.4 89 5.5
Small intestine 152 2 .1 2 .1
Colon 153 138 4.3 64 4.1 74 4.5
Rectum and 154 35 1.1 22 1.4 13 .8
Liver and Intra 155 129 4.0 73 4.7 56 3.4
Gall bladder 156 35 1.1 16 1.0 19 1.2
Pancreas 157 134 4.2 75 4.8 59 3.6
Peritoneum 158 - - - - - -

Others 159 47 1.5 28 1.8 19 1.2

Respiratory and
Intrathoracic
Organs 160-1659 407 12.7 279 17.8 128 7.8

Nasal Cavities, 160 4 .1 3 .2 1 .1

Middle Ear and
Accessory sinuses

Larynx 161 72 2.3 63 4.0 9 .6

Trachea 162 329 10.3 212 13.5 117 7.2
 TABLE 8 (Cont'd)

CANCER MORTALITY RATES BY SPECIFIC SITE AND SEX

PUERTO RICO, 1980

MALIGNANT T07A,>L MALES FEMALES

NEOPLASM CODE NUM. RATE* NUM. RATE* NUM. RATE*

Other Resp. 163-1659 2 .1 1 .1 1 .1

Neoplas of Bone,
Connective Tissue 170-1759 194 6.1 28 1.8 166 10.2

Female Breast 174 138 4.3 - -

138 8.5
Male Breast 175
Other Neoplas 170-1739 56 1.8 28 1.8 28 1.7
Gen11o-ur inary 179-1899 474 14.8 294 18.8 180 11.0
Organs

Cervix Uteri 180 146 1.4 46 2.8

Placenta 179-181 63 2.0 - - 63 3.9
Ovari 1930 32 1.0 — — 32 2.0

Other females
Genital Organs 1832-1839 13 .4 - - 13 .8

Prostate 185 225 7.0 225 14.4 — -

Other Male
Genital 186-1879 10 .3 10 .6
Bladder 188 56 1.8 40 2.6 16 1.0

Kidney and other

Unspecified 189 29 .9 19 1.2 10 .6

Other and
Unspecified 190-1999 702 21.9 414 26.4 288 17.7

Lymphatic and
hematopoietic 200-2089 311 9.7 167 10.7 144 8.8

Leukemia 204-2089 151 4.7 79 5.0 72 4.4

Others 2039 160 5.0 88 5.6 72 4.4

Source: Puerto Rico Health Department, Vital Statistics Report, 1980.

*Rate by 100,000 Inhabitants.

 TABLE 9

CANCER MORTALITY RATES BY SPECIFIC SITE AND SEX

PUERTO RICO, 1982

MALIGNANT TOTAL MALES FEMALES

NEOPLASM CODE NUM. RATE* NUM. RATE* NUM. RATE*

TOTAL 140-2089 3,296 100.8 1,923 120.8 1,373 81.9

Lip, oral cavity

and pharynx 140-N1499 148 4.5 119 7.5 29 1.7

Lip 140 1 -
1 .1 — _

Tongue 141 25 .8 20 1.3 5 .3

Salivary Glands 142 4 .1 1 .1 3 .2
Gum 143 3 .1 1 .1 2 .1
Floor of Mouth 144 8 .2 7 .4 1 .1

Other 145 19 .6 15 .8 6 .4

Pharynx 146-1489 33 1.0 30 1.9 3 .2

Oral and ill

defines Sites 149 55 1.7 46 2.9 9 .5

Digestive organs
and peritoneum 150-1599 1,185 36.2 685 43.0 500 29.8

Esophagus 150 227 6.9 163 10.2 64 3.8

Stomach 151 333 10.2 209 13.1 124 7.4
Small intestine 152 8 .2 7 .4 1 .1
Colon 153 175 5.4 85 5.3 90 5.4
Rectum and 154 52 1.6 21 1.3 31 1.8
Liver and Intra 155 169 5.2 95 6.0 74 4.4
Gall bladder 156 37 1.1 12 .8 25 1.5
Panereas 157 117 3.6 63 4.0 54 3.2
Peritoneum 158 5 .2 3 .2 2 .1
Others N159 62 1.9 27 1.7 35 2.1

Respiratory and
Intrathoracic
Organs N160-1659 499 15.3 369 23.2 130 7.8

Nasal Cavities, 160 7 .2 5 .3 2 .1

Middle Ear and
Accessory sinuses

Larynx 161 91 2.8 80 5.0 11 .7

Trachea 162 395 12.1 281 17.6 114 6.8
 64

TABLE 9 (Cont'd)

CANCER MORTALITY RATES BY SPECIFIC SITE AND SEX

PUERTO RICO, 1982

MALIGNANT TOTAL MALES FEMALES

NEOPLASM CODE NUM. RATE* NUM. RATE* NUM. RATE*

Other Resp. 163-1659 6 .2 3 .2 3 .2

Neoplas of Bone,
Connective Tissue 170-1759 244 7.5 46 2.9 198 11.8

Female Breast 174 177 5.4 — _

177 10.6
Male Breast 175 3 .1 3 .2 -

Other Neoplas 170-1739 64 2.0 43 2.7 21 1.3

Genito-urinary 179-1899 548 16.8 341 21.4 207 12.3
Organs

Cervix Uteri 180 38 1.2 — — 38 2.3

Placenta 179-181 83 2.5 - - 83 4.9
Ovari 1830 44 1.3 — — 44 2.6

Other female
Genital Organs 1832-1839 13 .4 — 13 .8

Prostate 185 274 8.4 274 17.2 - -

Other Male
Genital 186-1879 14 .4 14 .9 - -

Bladder 188 59 1.8 39 2.4 20 1.2

Kidney and other

Unspecified 189 23 .7 14 .9 9 .5

Other and
unspecified 190-1999 384 11.7 208 13.1 176 10.5

LymDhatic and
hematopoietic 200-2089 288 8.8 155 9.7 133 7.9

Leukemia 204-2089 143 4.4 81 5.1 62 3.7

Others 200-2039 145 4.4 74 4.6 71 4.2

Source: Puerto Rico Health Department, Vital Statistics Report, 1982.

*Rate by 100,000 habitants.

 65

of 14.8 In 1980 and 16.8 In 1982.

The leading specific sites among males was cancer of the prostate

in 1980 with 14.4 and lung or tracheal cancer in 1982, with a rate of

17.6. Among females it was cancer of the breast for both years with

rates of 8.5 and 10.6, respectively. Cancers of the digestive system

occupied the second and third positions for both sexes. (See Tables 10

and 11.)

Municipality of Residence

The Island of Puerto Rico is divided into six health regions and

two sub-regions. The metropolitan health region (Table 12) in the

northern part of the island had the highest regional cancer rate in

1980, with 116.3. The municipalities within that region with the

highest rates were San Juan (180.2) and Rio Piedras (126.5).

The Ponce region in southern Puerto Rico had a rate of 110.2. The

municipalities of Arroyo and Coamo had higher cancer mortality rates

than other municipalities in this region, with 151.2 and 148.9,

respectively. However, even when span of time is too short, data shows

in Table 13 that in 1982 the rates for these two municipalities

declined significantly, to 97.1 and 124.0. Further research is needed

to include a long span of time in order to measure changes by type of

diseases related with pollution, such as respiratory diseases and

cancer.

In 1980 the northern central Bayam6n region registered a low

regional rate, but Catafio, the port for the region and a municipality

near San Juan, reported a rate of 150.9. In 1982 a substantial

increase in the cancer rate was registered, making Cataffo the

 TABLE 10

PRINCIPAL SPECIFIC CANCER CAUSES OF DEATH FOR MALES

FUERTO RICO, 1980 AND 1982

SPECIFIC MALES 1980 SPECIFIC MALES 1982

CAUSES NO. RATE* CAUSES NO. RATE*

Prostate 225 14.4 Lung (Trachea) 281 17.6

Lung (Trachea) 212 13.5 Prostate 274 17.2
Stomach 210 13.4 Stomach 209 13.1
Esophagus 173 11.0 Esophagus 163 10.2
Pancreas 75 4.8 Liver 95 6.0
Liver 73 4.7 Colon 85 5.3

Sources; Puerto Rico Department of Health, Vital Statistics Report,

1980 and 1982.

*Per 100,000 inhabitants

TABLE 11

PRINCIPAL SPECIFIC CANCER CAUSES OF DEATH FOR FEMALES

PUERTO RICO, 1980 AND 1982

SPECIFIC FEMALES 1980 SPECIFIC FEMALES 1982

CAUSES NO. RATE* CAUSES NO. RATE*

Breast 138 8.5 Breast 177 10.6

Lung (Trachea) 117 7.2 Stomach 124 7.4
Uterus** 109 6.8 Uterus 121 7.2
Stomach 89 5.5 Lung (Trachea) 114 6.8
Colon 74 4.5 Colon 90 5.4
Pancreas 59 3.6 Liver 74 4.4

Sources; Puerto Rico Department of Health, Vital Statistics Report,

1980 and 1982.

*Per 100,000 inhabitants

**Cervix uterus and placenta.
 67

TABLE 12

CANCER MORTALITY RATES BY MUNICIPALITY OF RESIDENCE

PUERTO RICO, 1980 AND 1982*

POP. CANCER DEATHS POP. CANCER DEATHS

MUNICIPALITY 1980 1980 RATE 1982 1982 RATE

Total 3,199,300 3,285 102.7 3,269,800 3,296 100.8

Areclbo Region 369,400 383 103.7 376,857 394 104.5

Areclbo Area 222,300 223 100.3 225,719 242 107.2
Areclbo 86,900 86 99.0 88,043 95 107.9
Camuy 25,00 25 100.0 25,580 29 113.4
Hatlllo 29,100 27 92.8 29,206 29 99.3
Lares 26,900 28 104.1 27,480 26 94.6
Quebradillas 19,900 16 80.4 20,196 23 113.9
Utuado 34,500 41 118.8 35,214 40 113.6
Manat1 Area 147,100 160 108.8 151,138 152 100.6
Barceloneta 18,900 27 142.9 19,249 26 135.1
Clales 16,100 17 105.6 16,709 16 95.8
Florida 7,200 10 138.9 7,547 12 159.0
Manat1 36,600 44 120.2 37,348 40 107.1
Morovls 21,300 16 75.1 21,887 18 82.2
Vega Baja 47,000 46 97.9 48,398 40 82.6
Bayanfin Region 499,200 435 87.1 571,750 459 89.7
Barranquitas
Area 111,500 86 77.1 114,961 86 74.8
Barranquitas 21,800 17 78.0 22,386 18 80.4
Comerlo 18,300 14 76.5 18,841 12 63.7
Corozal 28,300 22 77.7 29,258 26 88.9
Naranjito 23,700 24 101.3 24,485 15 61.3
Orocovls 19,400 9 46.4 19,991 15 75.0
Bayamfin
Area 257,100 227 88.3 262,858 246 93.6
Bayam6n 196,700 194 98.6 200,659 187 93.2
Toa Alta 32,100 12 37.4 32,902 26 79.0
Vega Alta 28,300 21 74.2 29,297 33 112.6

Catafio Area 130,600 122 93.4 133,931 127 94.8

Catafio 26,500 40 150.9 27,352 47 171.8
Dorado 25,700 28 108.9 26,391 17 64.4
Toa Baja 78,400 54 68.9 80,188 63 78.6
Caguas Region 446,300 423 94.8 457,472 465 101.6
Caguas Area 222,700 196 88.0 227,098 231 101.7
Aguas Buenas 22,500 20 88.9 23,061 25 108.4
Caguas 118,500 106 89.5 120,834 108 89.4
Gurabo 23,700 22 92.8 24,047 35 145.5
Juncos 25,500 23 90.2 25,870 32 123.7
San Lorenzo 32,500 25 76.9 33,286 31 93.1

c
 TABLE 12 (Cont'd)

POP. CANCER DEATHS POP. CANCER DEATHS

MUNICIPALITY 1980 1980 RATE 1982 1982 RATE

Cayey Area 91,700 81 88.3 94,320 91 96.5

Aibonito 22,300 22 98.7 22,879 21 91.8
Cayey 41,100 38 92.5 42,197 48 113.8
Cldra 28,300 21 74.2 29,244 22 75.2
Humacao Area 131,900 146 110.7 136,054 143 105.1
Humacao 46,200 57 123.4 47,683 56 117.4
Las Pledras 22,500 24 106.7 23,019 20 86.9
Maunabo 11,800 5 42.4 12,093 14 115.8
Naguabo 20,700 20 96.6 20,963 18 85.9
Yabucoa 30,700 40 130.3 35 108.4
Mayagtiez Region 268,800 276 102.7 273,464 282 103.1
Mayagtiez Area 194,300 190 97.8 198,075 206 104.0
Aflasco 23,000 19 82.6 23,814 15 63.0
Cabo Rojo 34,000 46 135.3 34,484 51 147.9
Hormigueros 14,000 7 50.0 14,227 16 112.5
Las Marlas 8,700 5 57.5 8,965 7 78.1
Maricao 6,600 6 90.9 6,941 4 57.6
Mayaguez 76,200 97 100.8 97,628 103 105.5
Rincdn 11,800 10 84.7 12,016 10 83.2
San GermSn Area 74,500 86 115.4 75,389 76 100.8
Lajas 21,300 27 126.8 21,475 21 97.8
Sabana Grande 20,200 23 113.9 20,567 20 97.2
San GermSn 33,000 36 109.1 33,347 35 105.0
Aguadilla
Sub-region 188,200 152 80.8 192,768 167 86.6
Aguada 31,600 25 79.1 32,430 26 80.2
Aguadilla 53,500 46 86.0 55,799 48 86.0
Isabela 37,600 28 74.5 38,143 41 107.5
Moca 29,400 23 78.2 29,969 25 83.4
San SebastlSn 36,100 30 83.1 36,427 27 74.1
Ponce Region 536,500 591 110.2 550,443 560 101.7
Guayana Area 102,000 109 106.9 104,235 116 111.3
Arroyo 17,200 26 151.2 17,509 17 97.1
Guayana 40,300 42 104.2 41,359 45 108.8
Patilias 17,900 12 67.0 18,195 19 104.4
Salinas 26,600 29 109.0 27,175 35 128.8
Ponce Area 337,700 384 113.7 346,679 363 104.7
Adjuntas 18,700 16 85.6 19,342 15 77.6
Coamo 30,900 46 148.9 31,456 39 124.0
Jayuya 14,800 13 87.8 15,281 17 111.2
Juana Dfaz 43,600 42 96.3 44,599 43 96.4
Ponce 189,000 222 117.5 193,988 206 106.2
Santa Isabel 19,900 20 100.5 20,468 28 136.8
Villalba 20,800 25 120.2 21,545 15 69.6
 TABLE 12 (Cont'd)

POP. CANCER DEATHS POP. CANCER DEATHS

MUNICIPALITY 1980 1980 RATE 1982 1982 RATE

Yauco Area 96,800 98 101.2 99,529 81 81.4

GuSnica 18,800 27 143.6 19,220 14 72.8
Guayanilla 21,100 18 85.3 21,616 16 74.0
Peffuelas 19,100 20 104.7 19,840 18 90.7
Yauco 37,800 33 87.3 38,853 33 84.9
Metropolitan
Region 785,700 914 116.3 799,699 842 105.3
Carolina Area 270,400 224 82.8 276,355 201 72.7
Canfivanas 32,000 25 78.1 32,792 31 94.5
Carolina 165,800 140 84.4 169,159 120 70.9
Loiza 21,000 20 95.2 21,609 12 55.5
Trujillo Alto 51,600 39 75.6 52,795 38 72.0
San Juan Area 515,300 690 133.6 523,344 641 122.5
Guaynabo 81,100 81 99.9 82,209 79 96.1
Rio Piedras 323,200 40.9 126.5 329,177 393 119.4
San Juan 111,000 200 180.2 111,958 169 150.9
Fajardo
Sub-region 105,200 86 82.7 107,347 110 102.5
Celba 14,800 16 108.1 15,372 16 104.1
Culebra 11,300 1 76.9 1,306 - -

Fajardo 32,100 30 93.5 32,604 48 147.2

Luquillo 15,00 10 66.7 15,306 15 98.0
Rio Grande 34,400 22 64.0 34,987 21 60.0
Vieques 7,600 8 105.3 7,772 10 128.8

Sources: Puerto Rico Health Department, Vital Statistics Report,

1980 and 1982.

* Rate by 100,000 Habitants.

 70

TABLE 13

MUNICIPALITIES WITH TEN HIGHEST CANCER MORTALITY RATES

PUERTO RICO, 1980 AND 1982

1980 1982
Municipality Rate Municipality Rate

San Juan 180.2 Catafio 171.8

Arroyo 151.2 Florida 159.0
Catafio 150.9 San Juan 150.9
Coamo 148.9 Cabo Rojo 147.9
GuAnlca 143.9 Fajardo 147.2
Barceloneta 142.9 Gurabo 145.5
Florida 138.9 Santa Isabel 136.8
Cabo Rojo 135.3 Barceloneta 135.1
Yabucoa 130.3 Salinas 128.8
La jas 126.8 Vieques 128.7

Sources: Puerto Rico Department of Health, Vital Statistics Report,

1981 and 1982.
municipality with the highest rate on the entire Island (171.8). It is

noteworthy that many chemical and industrial plants are located in

Catafio, and this municipality is considered a high-risk pollution area.

Cancer mortality by geographic area in Puerto Rico provides

important data patterns for further study. For instance, in both 1980

and 1982 the ten municipalities with the highest cancer rates were

located along the Island’s coastline, with the exception of Coamo in

1980 and Gurabo in 1982. (Table 13 shows that five of the ten

municipalities with high cancer death rates in 1980 do not remain with

high cancer rates in 1982 and five new appear on the list for this

year.) Searching for causal relationships, we looked specifically for

a relationship between these municipalities and the location of

chemical industries. A computer list of such industries, provided by

the Puerto Rico Environmental Quality Board, was reviewed. The

list includes industries that are considered high-risk polluters

because they generate solid or toxic waste and do not have treatment

plants or transportation set-ups for disposal. Significantly, five of

the ten coastal municipalities contained a high-risk industry: San

Juan, Catafio, Barceloneta, Gurabo and Yabucoa.

Obviously, because of the short time to trace trends, this is

not enough evidence to support arguments for a direct relationship

between the location of high-risk industries and the existence of high

cancer rates in these locations. However, there are valid arguments in

^Puerto Rico Environmental Quality Board, Land Pollution

Control Area Generator, 1985, pp. 1-22.
that direction. Rushefsky, In Making Cancer Policy, quotes Weinstein

(1986), a prominent cancer scientist:

The majority (50-802) of human cancers are due to environmental

(i.e., exogenous rather than hereditary factors. They are,
therefore, in principle preventable by identifying the
causative agents and reducing human exposure to them....

Within the past few decades there has been a marked increase in
the exposure of humans to synthetic chemicals and their various
products, both in the workplace and the general environment.
Although there is, thus far, no evidence that this has led to a
marked increased in total cancer incidence, a number of these
synthetic compounds are carcinogenic in experimental animals
and several have clearly been responsible for the causation of
cancers in humans...55

Weinstein made three important points. First, cancer is an

important cause of death; second, most incidences of cancer are

environmentally induced; and third, there has been a drastic increase

in exposure to synthetic chemicals, many of which have been implicated

as carcinogens. While he stated that there is no direct proof that

those chemicals are an important cause of cancer, this position was

clearly implied.^

While it is not the aim of this study to investigate the

relationship of environment and cancer mortality, evidence exists that

points to an association between the exposure of humans to chemical

and other pollutants and cancer deaths. We suggest this relationship

should be investigated in future research -in Puerto Pico.

^^Milton C. Weinstein, Control of Carcinogens, quoted in Mark

E. Rushefsky's, Making Cancer Policy (Albany, N.Y.: State University
of New York Press, 1986), pp. 152-153.

56 Ibid., p. 152.
MINICIPIOS WITH HICH CANCER RATES
 n

%
2

*
1
a
o
2
9
2
■o
I
9
RATES

in
CANCER
HICH

£
WITH

0£
• •
U rsi
MUNICIPIOS

IS

>*5
81
* i

J
f
 75

Cancer Incidence In Puerto Rico; 1980 and 1982

Incidence

Central Cancer Registry annual figures provide Important

Incidence data through the classification of all new cancer cases

diagnosed in hospitals, clinics and private offices of physicians

occurring in a year. In 1980 6,031 new cancer cases were registered,

292 more than the 5,739 registered in 1979. The annual average from

1970 to 1972 was 4,396 cases, compared with 3,179 for the period from

1960 to 1962, and co 2,206 from 1950 to 1952.57

In 1982, 6,236 new cancer cases were diagnosed in Puerto Rico,

205 more than in 1980. There was also a slight increase in the crude

incidence rate (188.5 in 1980 to 190.7 in 1982).*^

Incidence by Sex and Age

Sex and age incidence data follow patterns established in other

studies. The 1980 crude incidence rate, as previously mentioned, was

188.5 per 100,000 inhabitants; 197.7 for males and 179.7 for females

(see Table 14). The distribution of cancer cases by sex and age group

shows that 3,099 cases, equivalent to 51.4 percent, were diagnosed in

males and 2,932 cases, equivalent to 48.6 percent, in females.

Cancer incidence was greater among males than among females

^Puerto Rico Department of Health, Central Cancer Registry,

Cancer Control Program, Cancer in Puerto Rico 1980 (San Juan, Puerto
Rico, 1980), p. 1.

58Ibid., p. 2.
 76

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from age 55; the reverse was true for ages 25 to 54.

Of all cancer cases diagnosed in 1982, 51 percent were males

and 49 percent, females. Cancer Incidence was higher among females

from ages 20 to 59, and among males from age 60 and over. The crude

incidence rate Increased to 201.1 for males and 180.9 for females.

Incidence by Primary Site and Sex

Malignancy locations vary by sex. During 1980, prostate cancer

was the primary cancer site among males in 1980, with a crude

incidence rate of 32.2, a dramatic 12.3 percentage point increase over

the crude rate registered in 1970 (see Table 16). While the stomach

cancer rate for males was slightly higher in 1970, it decreased in

1980. Cancer of the trachea, however, increased from 13.1 in 1970 to

18.1 in 1980. Cancer incidence rates were significantly lower among

males versus females for cancers of the skin, multiple myeloma, liver

and gall bladder.

Among females, the cervix was by far the leading cancer site in

1970, with a crude incidence rate of 45.5 percent, which dropped to

36.9% by 1980. (See Table 17.) On the other hand, the incidence rate

for breast cancer was significantly higher in 1980: 34.1 percent,

compared with 19.6 percent in 1970. It appears that improvement in

detection techniques contributed to this significant increase in the

number of new cases.

In 1982 the prostate gland remained the leading primary cancer

site among males, with an incidence rate of 39.4 percent, an increase

of 7.2 percent over the rate in 1980. The trachea and the stomach were
 79

TABLE 16

CRUDE INCIDENCE RATES AMONG MALES FOR

THE TWENTY LEADING CANCER SITES
PUERTO RICO, 197C AND 1980

Primary Site 1970 1980

Prostate IS.9 32.2

Stomach 2Ci. 9 18.4
Trachea, Bronchi, Lung 13.1 18.1
Oral Cavity 15.2 14.1
Esophagus 11.5 12.9
Urinary Bladder 7.6 10.9
Colon 4.2 9.2
Pharynx 8.3 8.2
Lymphoma 4.9 7.9
Rectum and Anus 3.4 7.7
Larynx 5.8 6.4
Leukemia 5.9 6.1
Pancreas 3.5 5.6
Penis 3.5 4.6
Kidney 1.7 3.3
Nervous System 2.2 3.1
Skin 2.4 2.7
Multiple Myeloma 1.6 2.6
Liver 3.1 2.2
Gall Bladder 1.4 1.9

Source: Puerto Rico Department of Health, Central Cancer Registry

Cancer Control Program; Cancer in Puerto Rico 1980, 1980.
 80

TABLE 17

CRUDE INCIDENCE RATES AMONG FEMALES FOR

THE TWENTY LEADING CANCER SITES
PUERTO RICO, 1970 AND 1980

Primary Site 1970 1980

Cervix Uteri 45.5 36.9

Breast 19.6 34.1
Colon 5.9 10.2
Uterus 5.1 9.9
Stomach 9.1 8.0
Trachea, Bronchi, Lung 4.8 7.8
Rectum and Anus 5.8 6.9
Lymphoma 4.3 6.6
Ovary 3.9 5.1
Oral Cavity 4.3 4.6
Esophagus 5.4 4.4
Thyroid Gland 2.1 4.2
Urinary Bladder 3.5 4.2
Pancreas 2.7 3.6
Leukemia 4.9 3.4
Gall Bladder 2.7 3.1
Vulva 1.6 2.1
Skin 2.3 1.9
Nervous System 1.2 1.9
Kidney 0.7 1.8

Source: Puerto Rico Department of Health, Central Cancer Registry

Cancer Control Program: Cancer in Puerto Rico 1980, 1980.
the second and third sites, with rates of 18.5 and 17.5, respectively

(see Table 18). The number of reported cases diagnosed as cancer of

the trachea was lower in 1980. Cancer of the oral cavity accounted for

14.1 percent in 1980 and decreased to 13.2 percent in 1982.

Among males so m e rates for specific cancer sites decreased

between 1980 and 1982, including cancers of the stomach, oral cavity,

urinary bladder, esophagus, lymphoma, rectum and anus, leukemia,

pancreas, skin, penis, nervous system and others. This drop should be

followed up to determine if the tendency will continue in future years.

Among females, the breast remained the primary site in 1982,

increasing by 4.7 from 1980 to 38.8 percent. The same pattern was

observed for stomach cancer, the rate increasing from 8.0 to 11.0

percent. (See Table 19.) Rates of cancer of the cervix uteri declined

steadily from 1970 to 1982. Cancer sites with declining rates are the

trachea, rectum, oral cavity, esophagus, thyroid and urinary bladder.

 82

TABLE 18

CRUDE INCIDENCE RATES AMONG MALES FOE

THE TWENTY LEADING CANCER SITES
PUERTO RICO, 1970, L380 AND 1982

PRIMARY SITE 1970 1980 1982

Prostate 19.9 32.2 39.4

Trachea 13.1 18.1 18.5
Stomach 20.9 18.4 17.5
Oral Cavity 15.2 14.1 13.5
Color. 4.2 9.2 12.6
Pharynx 8.3 8.2 10.3
Urinary Bladder 7.6 10.9 10.2
Esophagus 11.5 12.9 10.0
Larynx 5.8 6.4 8.1
Lymphoma 4.9 7.9 7.8
Rectum and Anus 3.4 7.7 7.2
Leukemia 5.9 6.1 5.0
Pancreas 3.5 5.6 3.6
Kidney 1.7 3.3 3.6
Skin 2.4 2.7 3.3
Penis 3.5 4. 6 3.0
Liver 3.1 2.2 3.0
Nervous System 2.2 3.1 3.0
Multiple Myeloma 1.6 2.6 2.3
Gall Bladder, Bile Duct 1.4 1.9 1.8

Source: Puerto Rico Department of Health, Central Cancer Registry

Cancer Control Program: Cancer in Puerto Rico 1982, 1982.
 TABLE 19

CRUDE INCIDENCE RATES AMONG FEMALES

FOR THE TWENTY LEADING CANCER SITES
PUERTO RICO, 1970, 1980 AND 1982

PRIMARY SITE 1970 1980 1982

Breast 19.6 34.1 38.8

Cervix Uteri 45.5 36.9 30.4
Stomach 9.1 8.0 11.0
Colon 5.9 10.2 10.9
Uterus 5.1 9.9 9.S
Trachea, Bronchi, Lung 4.8 7.8 7.5
Lymphoma 4.3 6.6 6.0
Ovary 3.9 5.1 5.7
Rectum and Anus 5.8 6.9 4.8
Leukemia 4.9 3.4 4.6
Oral Cavity 4.3 4.6 4.1
Gall Bladder 2.7 3.1 3.9
Esophagus 5.4 4.4 3.8
Thyroid Gland 2.1 4.2 3.8
Pancreas 2.7 3.6 3.6
Urinary Bladder 3.5 4.2 3.2
Nervous System 1.2 1.9 2.7
Skin 2.3 1.9 2.5
Multiple Myeloma 1.1 1.7 2.5
Vulva 1.6 2.1 2.1

Source: Puerto Rico Department of Health, Central Cancer Registry

Cancer Control Program: Cancer in Puerto Rico 1982, 19S2.
Conclusions

Figures presented in this chapter show that cancer was an

insignificant disease and cause of death in Puerto Rico in 1931,

becoming the second leading cause of death by 1980. Currently first

among general categories of incidence is cancer of the digestive

system, particularly among males. Among cancers of the digestive

system are cancers of the stomach and colon for males. For both sexes,

but particularly for males, cancer incidence increases with advancing

age. Cancer of the breast is the leading cause of cancer death among

females, and cancer of the prostate gland, trachea and lungs, among

males. Most cancer deaths occur among people aged 65 and over. Cancer

incidence was higher among females from 20 to 59, and among males from

age 60 and over. The San Juan metropolitan health region in northern

Puerto Rico had the highest cancer rates in both years studied.

Although there is no conclusive evidence to that effect, a number of

authoritative papers have been published linking the existence of

polluting industries in a particular location to a high incidence of

cancer. This possible link as well as the relation of dietary habits,

alcohol consumption, and cigarette smoking to cancer incidence among

Puerto Ricans should be studied further.

 CHAPTER IV

METHODOLOGY TO EVALUATE CONSISTENCY

Objectives

The study’s objectives are the following:

1. To evaluate consistency between cancer sites identified on

death certificates as underlying causes of death and

primary sites reported on clinical records at the Cancer

Registry.

2. To identify and evaluate correlates of consistency

including sex, age, region of death, institution where the

death occurred, type of physician who reported the death,

person who Informed of the death and basis for diagnosis.

3. To evaluate the number of cases coded as unspecified

cancers.

Operational Definition of Variables

For the purposes of this study, the concept of consistency was

defined as the agreement or exact correspondence between the death

certificate code stating the underlying cause of death and the

codification of the primary site of cancer which appears in the

patient clinical record prior to death. The comparison between

documents was made using a computer linkage of records. Records agreed

when code numbers identifying the cause of death and the clinical

diagnosis were matched. Since both documents codify the site of the

85
cancer according to the International Classification of Diseases for

Oncology of 1979, the comparison was performed using a three digit

codification level. A total of forty four (44) codes or groups of

specific cancer sites were included In the study to measure

consistency, as shown in Table 26.

The study included an analysis of several sociodemographic

variables to measure their association with consistency in records:

age, sex, institutions reporting the death, region of death, informant

of death, basis of diagnosis and the number of unspecified cases.

Other research including a number of such variables point to their

importance as factors in the study of mortality and incidence data.

The variable "sex," for instance, is very important in

demographic studies because there are distinct differences in data for

males and females. In this study the variables are important in the

evaluation of the consistency of numbers and percentages and for the

analysis of mortality and incidence data. Sex may affect cause of

death statistics and their interpretation, since some diseases and

causes of death are related to a specific sex. Moreover, certain types

of the disease can be much more complex for one sex than for the

other. The classification and codification of the cause of death

statement and diagnosis may be more difficult for one sex versus the

other, increasing the percentage of differentiation on codification

59
and consequently affecting the consistency of data.

5%enry S. Shryock, Siegel Jacobs, and Associates, Studies in

Population: The Method and Materials of Demography (New York:
Academic Press, 1976), p.29.
 The Bonser and Thomas study cited in Chapter I found a high

degree of Inconsistency between the death certificate and clinical

diagnosis among the records of female cases. They conclude that

"errors and untraced cases were proportionally higher in

60
females." Another study measuring consistency of cardiovascular

and renal mortality showed that sex should be taken into account,

because it demonstrates that a better quality of diagnosis was found

for males. The results are as follows: "The proportion of diagnoses

solidly established is 36 percent for males and 30 percent for female

decedents.

As with sex composition, age data contribute to the description

and analysis of demographic data and to the evaluation of quality and

consistency of mortality and incidence data. Determining the

difficulties of codification according to age nay lead to improvement

in registration procedures for cancer registration and vital

statistics programs.

The age data may also help in preparing current estimates of

mortality (survival data) and incidence data. While including age as

a demographic variable helps in showing variation of consistency of

records and the influence of age on percentages of agreement of data,

it also seems that age is an important factor in the prevalence and

^Georgina M. Bonser and Gretta M. Thomas, "An Investigation

of Cancer of the Lung in Leeds,” British Journal of Cancer 13 (March
1959): 1-12.

®*hario R. Garcia Palmier!, et al; "Coronary Disease

Mortality— A Death Certificate Study," Journal of Chronic Disease 18
(1965): 1317-1323.
incidence of certain diseases. Some cancers are more often associated

with particular age groups and, probably, consistency differences are

related to the age of the patient. Alderson and Meade for example,

have pointed out:

"A significantly higher proportion of discrepant coding was

found with increasing age, sex, for certain hospitals and
specialties..."62

They also explain age;

”... has the greatest effect on cancer morbidity and mortality.

In the United States, cancer incidence doubles after age 25,
with every 5-year increase in age. This increase is probably
due to an accumulation of pre-malignant changes occurring over a
long period so that cancer exists primarily in the aged."63

Cancer deaths tabulated according to place of residence are also

useful, and is required information for local demographic registers as

well as for the National Center for Health Statistics. As early as

1846, Lemuel Shattuck advocated the study of geographic patterns in

64
disease rates as part of the approach needed for their control.

Since the United Nations recommended that tabulations for a

geographic area be used to help determine the health status of the

area population, differences between one geographic area and another

C-M.R. Alderson and T.K. Meade, "Accuracy of Diagnosis on

Death Certificates Compared with that in Hospital Records," British
Journal of Preventive Social Medicine 21 (1967): 22-29.

63Ibid., p. 23.

64puerto Rico Department of Health. Central Cancer Registry,

Division of Cancer Control, Cancer in Puerto Rico: Incidence,
Probability, Mortality and Survival, 1950-1964 (San Juan, Puerto Rico,
1967), p. 9.
liave been used In the efforts towards disease control, even before the

etiology has been Identified.

For the purpose of this study, the geographic area where a

certificate originated is used indirectly to suggest further

evaluation of the codification procedures of the particular local

registries, along with the skills of the particular coders.

Codification problems, such as misunderstandings of rules or other

factors, will obviously affect the consistency of data from a

particular location.

Information regarding the type of hospital where death occurred Is

important because it represents the "service load." The inclusion of

this variable serves as a means of evaluating consistency in terms of

hospital ownership or management (government or private

corporations). Consideration of this variable makes it possible to

make recommendations on particular issues related to government cancer

programs and hospitals so as to improve, reverse, or maintain

codification and registration for reliable data on cancer incidence

and mortality.^

Various researchers have argued that discrepancies associated with

age are also related to the type of hospital into which the patient is

^->U.S. Department of Health and Human Services, Public Health

Service. National Cancer Institute, Epidemiological Approaches to the
Study of Cancer and Other Chronic Diseases, by Harold F. Dorn,
Monograph No. 19 (Bethesda, Maryland: January 1966), p. 7.
admitted.^ This relationship might be due to the fact that the

elderly suffer from those conditions which are directly associated

with discrepant codings and that patients with such conditions are

admitted to certain types of hospitals, such as long-stay hospitals,

cottage institutions, or geriatric centers, etc. This relationship was

beyond the scope of this research, as data on hospitals by type is

limited. However, it is an important association for further research.

The variable "type of physician who certified the death" and the

variable "informant of death" also were included, following a

recommendation of the Biometry Branch of the National Cancer

Institute. Regarding Puerto Rico they wrote:

"One of the problems we have encountered with the Puerto Rican

mortality data is that in a number of instances the cause of
death is supplied not by a physician but by a family member. ^

To obtain information about who certified the death, and to

include this information, two variables (who certified the death and

who was the informant of death) were evaluated and data was processed

by computer. The certificates used four categories: "physician who

attended the deceased," "physician who had not attended the

deceased,""physician informed by other person" and "none."

^fyl.R. Alderson and T.W. Meade, "Accuracy of Diagnosis on

Death Certificates Compared with that in Hospital Records," British
Journal of Preventive Social Medicine 21 (1967): 22-29.

^Letter from Mr. Earl S. Pollack, Sc.D., Chief Biometry

Branch, National Cancer Institute, Department of Health and Human
Services, September 12, 1984.
 91

The underlying assumption used in this research is that higher

percentages of consistency will be seen if the physician who certified

the death was the one who attended the deceased in life as a cancer

patient.In such cases, the doctor generally has available scientific

criteria, knowledge about the patient, and access to relevant medical

records. If, however, the physician who certified the death was not

the one who attended the deceased, it is to be expected that

percentages of consistency will be lower. In this case, doctors signed

the death certificate after seeing patients only in the final phase of

the disease and very frequently they did not have available all the

resources for accurate diagnoses. This same assumption is relevant

when the certifying physicians are merely informed about the deceased

by other persons.

All death certificates ask "who was the informant of death” as a

separate question. This variable was included again to evaluate the

Biometry Branch observation. The data then was processed and

consistency percentages calculated. It is important to remember that

there is a difference between who "certified the death" and who was

the "informant of death." All deaths must be certified by a physician

or pathologist. However, the physician may be informed about the

"cause of death" by another person or a relative of the deceased. On

the other hand, "the informant of death” is the person or individual

who provides the demographic portrait of the deceased.

Information regarding the basis of the diagnosis — the

scientific procedure used to determine the cancer diagnosis, for

example — was also included as an important influence factor on the

percentages of consistency. (See Appendix D for detailed definition of

procedures.) The data allows us to evaluate specific procedures, an

important area for further research. If a great proportion of the

cases are diagnosed using a technique such as a biopsy or a positive

histology where tissue samples are examined in a laboratory, these

cases, based on scientific evidence, are expected to be consistent

with the cause of death. If we do not find this consistency, other

intervening factors affecting the expected end results probably exist,

including accuracy of the codification and reporting of the correct

clinical diagnosis on the Registry form.

Other factors among those considered were the number of cases

codified as "unspecific” and those coded under the category of "other"

cancers. These cases are important since some deaths are extremely

difficult to classify due to unconfirmed characteristics of the

patients such as age and sex or to unclear diagnoses by physicians on

the death certificates. The proportion of deaths assigned to an

"unspecific" cancer or to other causes may be a good indicator of the

variation of percentages of consistency of data. To evaluate these

factors, code numbers 159, 184, 187, and 189 are included in this

analysis. The code numbers 190-199 and 207-209 have been excluded

because they are classified as "other" cancers, meaning cancers in

such organs as the eye, the brain and the nervous system. Specific

sites among these organs are codified using a four digit

classification.

The inclusion of variables "type of physician who certified the

death,” and "the basis for the diagnosis,” constituted a first in

measuring consistency of cancer mortality and cancer incidence data,

not only in Puerto Rico, but in the United States and elsewhere. We

hope that inclusion of such variables will help determine an adequate

public policy related to health services as well as to improve

codification rules and to evaluate procedures used by physicians in

the certification process. (None of the ten (10) prior studies

included in the review of literature in this project in Chapter I

considered these variables.)

Sources of the Data

The data used in this study to compare primary cancer site and

cause of death were obtained from two sources: patient records filed

at the Puerto Rico Cancer Registry from 1950 to 1982, and death

certificates stating cancer as the cause of death from the years 1980

and 1982. These two years were selected because Puerto Rico

implemented a new death certificate in 1979, and cause-of-death

codings were changed in the International Classification of Diseases.

Using data from years following these changes facilitated comparison

of cause-of-death data. To analyze sociodemographic data, the death

certificate document was utilized.

Flow of Data

Using a master tape of death certificates for 1980 and 1982,

provided by the Puerto Rico Health Department's Computer Center, and a

master tape of all cases registered at the Cancer Registry since 1950,

a computer merge was performed by name, sex, and date of birth. The

computer generated a list of the matched records and a cross-

tabulation of sociodemographic statistics for consistent cases.

Method of Analysis

Matched cases for both years were merged and cross-tabulated to

calculate consistency percentages and describe sociodemographic

variables, with the goal of identifying sources of variation. The

computer program included 10 variables: sex, age, institution

reporting the death, diagnosis (primary site), cause of death, region

of death, basis for diagnosis, person certifying the death, informant

of death and the number of unspecified cases. Each of these variables

is considered as a factor associated with the consistency of the

records.

To evaluate consistency by method or basis for diagnosis, a

computer program was designed to select clinical cases listing such

scientific confirmation of cancer as histology, hematology, x-rays,

etc. Cross-tabulations were requested by specific method and

percentage of consistency.

Consistency is evaluated by forty four specific sites (those

accepted by international rules). To evaluate consistency of cancer by

specific site, a classification of the cases was necessary to present

a distribution of consistency cases by specific cancer site.

The strategy used consists of a classification by site of cancer

presented in two tables (See Appendix G, Tables A and B). The first

column of the tables distributes absolute numbers of consistent cases

by site. The second column lists the percentage of consistency

depending on whether the Cancer Registry or the death certificate was

used as denominator or as point of reference to classify inconsistent

cases. That is, consistency changes by site depending on the source

used to calculate the percentage.

A third column presents the absolute number of inconsistent

cases by site according to each one of the sources. Column four lists

the percentages of inconsistency which were calculated using the total

number of cases codified by each specific site as denominator taken

from the fifth column.

The distribution of consistent cases in Table A corresponds to

the classification of cases according to the clinical record. Table B

shows the distribution according to the death certificate

classification.

Finally, to assess the level of consistency, Tables A and B were

used to cross-classify cancer sites into five groups (Table 26)

according to their similarity and proximity of consistency percentages

(all cases with 29.0 percent or less of consistency were put together,

30 to 49, 50 to 59, 60 to 69 and and all those with 70.0 percent or up

together). In this way, the sites were ranked in groups from the

highest to the lowest percentages of consistency according to each one

of the sources utilized to calculate consistency.

Another evaluation was carried out by determining the number of

cases classified as unspecified cancers. The category "unspecified,"

used to classify undetermined cancers, is listed officially in the

International Classification of Diseases of Oncology (ICD), Ninth

68
Revision. (See Appendix D) Because a first run of data in the

^®World Health Organization. International Classification of Diseases

for Oncology, 1979, Ninth Revision (Geneva, Switzerland, 1979), pp.1-427.
computer shows a considerable number of cases coded as unspecified

cancers, the decision was taken to evaluate this factor as a source

affecting the levels of consistency of data, in order to evaluate the

numbers and percentages for both consistent and inconsistent data.

Rationale of Tabulations

The tabulations which measure the consistency of cancer sites on

the two sets of records as well as the corresponding statistics

generated provide proper criteria for implementing monitoring

procedures for improving the quality of mortality and

prevalence cancer data. The information in the tables presented in

Chapter V is important to theevaluation of the content of the Cancer

Registry's clinical forms and the death certificates in terms of the

information each requests.

The documentation of the relationship of all the above-mentioned

factors associated with consistency may help cancer program personnel

to be more precise in the identification and codification of such

factors and corresponding categories.

Further, the consistency measurements and their relationships

with other variables will lead to improved coordination of coding

activities in the Cancer Registry Program and among the different

units of the Demographic Registry. The tabulations presented can be

used as instruments for analysis of specific methods of data

collection and to develop more precise querying techniques. For

example, tables of consistency by primary site and cause of death may,

in the future, lead to a review of a small sample of those records of

patients who died of certain types of cancer for which inconsistencies

 The demographic variables used in this study follow the

framework established by previous researchers to analyze social,

economic and demographic phenomena throughout the world and could be

used to aid in the development of a standardized international

methodology to measure consistency of data. It should be possible to

identify which cases possess some particular demographic or medical

characteristics that contribute to high percentages of consistency or

inconsistency. These tabulations also serve to formulate hypotheses

for stuo’ies of causes of discrepancies of cancer deaths and diagnoses

and possible intervention to reduce such discrepancies. It is

information that will enable health planners to propose new program

options for improved health protection, and, further, to enable

policy-makers to make resource allocation decisions.

 CHAPTER V

FINDINGS

MATCHED CASES, REJECTED CASES AND CONSISTENCY OF

CANCER CLINICAL RECORDS AND DEATH CERTIFICATES

The chief purpose of this chapter is to assist personnel dealing

with cancer data to assess the factors associated with consistency

between recorded cancer causes of death and diagnosis in Puerto Rico.

This chapter provides the opportunity to evaluate different variables

and their relationship with percentages of data consistency. Prior

research on this topic has provided different results in consistency

rates, pointing to variations in specific cancer primary sites, listed

causes of death, and demographic characteristics of the deceased.

Given the fact that cancer is the second cause of death on the

Island and rates are continously increasing, the possible relationship

of data consistency reported in clinical records and death

certificates and sociodemographic factors is highly relevant.

Based on the information provided by this chapter, it is

possible to obtain valuable and suggestive information for

registration, codification and public policy regarding cancer in

Puerto Rico.

The computer matched a total of 4,748 cancer records and death

certificates for both years studied. (See Table 20.) Of these, 397

cases, or 8.4 percent, were rejected because they lacked basic

98
 99

demographic information such as sex or age, making matching

impossible. A total of 4,351 cases were perfectly matched (91.6

percent). From this total, 2,371 cases (54.5 percent) were consistent

between clinical records and death certificated in recording primary

site of cancer and cause of death. (See Table 21.) Because the

evaluation of data demonstrates that the Cancer Registry and the

Demographic Registry each use different codes to codify lymphomas,

the numbers classified under code 196 and 200-209 were eliminated

from the total number of cases. After the elimination of these case

results, consistency remains almost the same, increasing only 1.5

percentage points, from 54.5 to 56.0 percent. (For a detailed

description of this procedure see Appendix K.)

Of the 4,351 matched cases, 2,657 cases corresponded to

males (61.1 percent) and 1,694 to females (38.9 percent). Most of the

matched records (63.6 percent) corresponded to persons in the 65-year

or more age group, and 83.1 percent corresponded to persons in the

55-year more age group (Table 22). This depicts identifiable cancer

as a degenerative disease that mainly attacks older adults.

Consistency and Sociodemographic Correlates

The analysis is based on combined data for 1980 and 1982,

and, as previously explained in the methodology (Chapter IV), it does

not attempt to include a trend analysis, due to the short time period

covered. Combining the data reduces the effect of random fluctuations

of variables in these two years. Percentages of consistency are

presented by sociodemographic variables. Two classifications of

consistent data are presented in considering site of cancer (Appendix

 100

TABLE 20

PERCENT DISTRIBUTION OF MATCHED AND REJECTED CASES

CASES NUMBER PERCENT

Matched 4,351 91.6

Rejected 397 8.4

Total 4,748 100.0

Sources: Puerto Rico Department of Health, Puerto Rico Cancer

Registry and Death Certificates, 1980 and 1982.

NOTE: 7, * Percentage by column

TABLE 21

PERCENT DISTRIBUTION OF CONSISTENT AND

INCONSISTENT CASES

CASES NUMBER PERCENT

Consistent 2,371 54.5

Inconsistent 1,980 45.5

Total Matched 4,351 100.c

Sources: Puerto Rico Department of Health, Puerto Rico Cancer

Registry and Death Certificates, 1980 and 1982.

NOTE: % * Percentage by column

(
 TABLE 22

PERCENTAGE DISTRIBUTION BY AGE AND SEX

OF MATCHED CANCER RECORDS

AGE MALES FEMALES BOTH SEXES

n n % n Z N %

0-4 19 .7 14 .8 33 .8
5-9 0 — 0 — 0 —
10-13 7 .2 5 .3 12 .3
14-15 4 .2 3 .2 7 _2
16-24 12 .5 15 .9 27
25-34 36 1.4 34 2.0 70 1.6
35-44 88 3.3 92 5.4 180 4.1
45-54 217 8.2 188 11.1 405 9.3
55-64 528 19.8 321 18.9 849 19.5
65 and more 1,746 65.7 1,022 60.3 2,768 63.6

Total 2,657 100.0 1,694 100.0 4,351 100.0

Percent 61. 1 38.9 100.0

Sources: Puerto Rico Department of Health, Puerto Rico Cancer

Registry and Demographic Registry , 1980 and 1982.

NOTE: n * Number of cases by age and sex

N * Total number of cases by age
% * Percentage by column
G, Table A and B), due to differences In the codification of cancer

site and depending on the source of these inconsistent cases. Because

of 'these differences, an evaluation of the changes in codification of

inconsistent data by cancer site has also been included. In other

words, discrepancies or differences between death certificate and

clinical diagnosis codifications by site also are analyzed in Chapter

V, Table 26.

Sex

Separate consistency data for males and females is included

because of possible differences by sex. Consistency percentages may

vary because of the relationship of certain cancer sites to specific

sexes. Even when this relationship is not considered specifically in

the project, this aspect may be affecting levels of consistency, and

it will be a topic for further research.

Consistency percentages were higher among male cases than among

female cases (see Table 23). Among males, there were 1,489 consistent

cases (56.0 percent) from a total of 2,657. Among females, a total of

882 cases (52.1 percent) were consistent cases from a total of 1,694.

This represents a difference of 3.9 percentage points. This result

agrees with other research findings (Bonser and Thomas, 1959, Garcfa

Palmieri, 1965), which point to high levels of inconsistency in all

records as well as a higher inconsistency rate for female cases. It is

argued that the degree of complexity of certain diseases varies

according to sex and, as a result, the differences between data

sources will also increase with age.

 TABLE 23

PE RCENTAGE DISTRIBUTION OF
CONSISTENT CANCER CASES BY SEX

CONSISTENT
SEX n % N

Males 1,489 56.0 2,657

Female 882 52.1 1,694

Total 2,371 54.5 4,351

Sources: Puerto Rico Department of Health, Puerto Rico Cancer

Registry and Death C e r t i f i c a t e s , 1980 and 1982.
 104

Age

Age is another helpful denographic variable in understanding

variations in c onsistency of data. Prior research n otes (as explained

in Chapter I) that c o n s i s t e n c y and accuracy of data is notably

influenced by the age of the patient. The results of the study

performed by A l d erson and M e a d e (1967) shows that discrepancies

(inconsistencies) betw e e n clinical diagnosis and under l y i n g cause of

death increase with increasing age. Alderson and M e a d e initially

argued that the discrepancies associated with age of the deceased

night be due to the fact that the elderly suffer from those conditions

which were directly assoc i a t e d with discrepant codings. They examined

three different diseases and separate diagnostic groups

(cerebrovascular accidents, arteriosclerotic heart disease and

pneumonia) and found that increasing age was not assoc i a t e d with any

significantly increased p r oportion of discrepant codi n g s in any of

these three diagnostic groups. In the case of cancer, age appeared to

bear no effect on the number of errors, but they e x p lained that this

result was probably due to the small numbers involved in the sample.

They also examined d i s c r e p a n c i e s among records of e l d e r l y patients

with multiple pathologies and found that they contributed to the

number of errors in the c o d i f i c a t i o n of data.

In the study of Gobbato et. al. (1982) and in the one performed

by Ehrlich (1974) the co n s i s t e n c y of data was also evaluated in

relation to age, and they found that the consistency of clinical

diagnosis w a s associated w i t h the a g e of the patient. That is,

( discrepancies increase as age increases. Because d i f f e rences in the

 105

presentation of the age categories used In ot'.t-r research, data is not

presented and compared.

A different tendency is. observed wit h Pu; t • ric.'s c er rats

and age. Table 24 shows that consistencies were h :ghe r (or o' dor

and lower for younger groups. The percentage of c .-nslste: i v lor the

groups of 65 or more years was higher than the yo tiger aye group of

0-24, equivalent to an increase of 33.7 percentage point*.

A possible explanation for this result is t ie fact that i y r / r =

cancers, the leading cancer cause of death among p ounce; people f r. r:

0-24 years of age, are codified in a different wa; by the f

Registry and by the death certificate creating a i - and 1. n.-r

percentage of consistency between cases reporting t'ri. type of ca^ -r

69
in both documents. It is observed in Tables A arc B of A. rer.uix C,

that a total number of 500 cases were codified by the Cancer Registry

under code 190-199, w h i c h includes code 196 — the n m usee ic

classify lymphoma cancers, while the Demographic registry includes

lymphomas in a different group of codes (200-209), ecui\a lent ic

Moreover, tabulations do not provide the opf, t: n.rs

which proportion of those mismatched corresponds tc spent ;;

groups. In order to avoid the effect of the differences ir: :A-_-

lymphoma codification, an estimate of the number if these cases y aye

was calculated and the n the effect on percentage of consistency was

examined (see A p p endix F). The results show in Table 24, Column B that

^ P u e r t o Rico Department of Health, Central Cancer Registry,

Cancer Control Program: Cancer in Puerto R ico 1 9 8 0 , (San Juan, Puerto
Rico, 1980) pp. 136-142.
 106

TABLE 24

PERCENTAGE DISTRIBUTION OF
CONSISTENT CANCER CASES EV AGE

A B
AGE CONSISTENT CONSISTENT1 T OTAL M A T C H E D 2
n % n £ N

0-24 18 22.8 14 17.7 79

25-44 113 45.2 107 42.8 250
45-64 675 53.8 654 52.1 1,254
65 or more 1,565 56.5 1,496 54.0 2,768

Total 2,371 54.5 2,271 52.2 4,351

Sources: Puerto Rico Department of Health, Puerto Rico Cancer Registry and
Death C e r t i f i c a t e s , -1980 and 1982.

1 P e r c e ntages in column E are an estimate of consistent

cases by age after the subtraction of cancers codified
as lymphoma.

2 The total matched cases (not the consistent ones) are the sum
of consistent plus inconsistent cases by age.
after the isolation of the number of lymphoma cancers, the number and

percentages of consistent data by specific age groups remain lower for

the younger group, or those between 0-24 years. An increase in the

d i ffere nce of percentages of consis t e n c y between the groups was

observed and differences with older groups is 36.3 percentage points

more in compa r i s o n to results presented without the elimination of

lymphomas, w h i c h is equivalent to 33.7.

Because differences in percentage are not so important, the

results suggest that discrepancies in the codification of cancers

among young people are due to other factors and further investigation

is necessary.

Other figures imply a relation between age and sex (see Table

25). There is a higher number of consistent cases for younger ages

(0-44) among females than for males. This difference by sex was

equivalent to 19.4 percentage points. For the 45-64 age group,

differences are low, but c o n s i stency was greater in older ages (65 or

more) for m ales than for females, equivalent to 59.5 percent and 50.9

percent. This also means that discrepanc ies were higher for the g roup

of 65 years or more among females than among males.

Specific Sites and Percentage of Consistency by Data Source

In evaluating the consistency of cancer by specific site, the

consistent cases were classified acc o r d i n g to the two sources of

information, the Cancer Registry record and death certificate

codifications (see Appendix G, Ta b l e s A and B). The percentages of

co n s i s t e n c y vary by site in both tables due to the effect of

 TABLE 25

PERCENTAGE DISTRIBUTION OF
CONSISTENT CANCER CASES BY SEX AND AGE

1CONSISTENT
AGE MALE FEMALE TOTAL MATCHED
/e % M F

0-44 28.3 47.7 166 149

45-64 54.2 53.2 745 509
65 or iaore 59.5 50.9 1,746 1036

Total 56.0 52.1 2,657 1,694

Sources: Puerto Rico Department of Health, Puerto Rico Cancer

Registry and Death C e r t i f i c a t e s , 1980 and 1982.
d ifferences In e n u m e ration of " i n c o n s i s t e n t " cases a c cording to the

source. The result was two different classifications of percent

consistent data by specific cancer site. The total number of

inconsistent cases remains the same (1,980 cases). Looking to Appendix

G and Table A, it was observed that the number of inconsistent cases

was presented by specific site. The column of inconsistent cases shows

the number of cases by site as diagnosed on the clinical record (but

not on the death certificate). The percentages were calculated by the

total number of cases in each site (row percentages). The idea wa s to

present the dicotomy and see differences and variation in codification

by site. On the other hand, Table B lists the number and percentage of

inconsistent cases wit h a specific site given as the cause of death

that did not match with the d i a gnoses on clinical records. This means

that any previous diagnosis indicating this same site did not appear

in the corresponding clinical record.

Using Tables A and B, a c ross- tabulation of cancers classified

by percentage of consistency was also prepared in Table 26. The

classification procedure consists of the assignment of each site in a

ranked group by percentage of consistency according to the source. The

horizontal axis represents the classification according to the

clinical record and the vertical axis according to the death

certificate. The table was divided into five (5) groups for each one

of the sources. The five groups are consistency percentages of 29 or

less, 30-49, 50-59, 60-69 and 70 percent and higher. The

classifications may h e l p to compare differences of c onsistency by

source and to evaluate the m a j o r discrepant sites w h i c h are grouped in

the column of low-high or vice versa.

As observed in Table 26, a total of 44 ca tegories are considered

(including six categories of unspecified cancers and other types).

Among the sites wit h the highest consistency, those with

consistency percentages of 70 or above are pancreas, trachea, female

breast and prostate. However, it is important to mention that even

w h e n female breast cancer was classified in the highest consistency

group by both sources, a d iff erence of 22.4 percentage points of

consistency is observed between the information of the clinical record

and the one in death certificates (See A p p endix G, Table A and B).

That is, there are fewer deaths reported from this cause than there

were clinical diagnoses, 69 cases in clinical records and only eight

cases in death certificates. In other words, prior clinical diagnoses

of breast cancer were not finally recorded as deaths caused by tumors

in this specific location.

It is important to c o n s i d e r that m a n y factors ma y affect the

final cause-of-death certification. One example is the increase in the

number and combination of breast cancer detection methods, including

an improvement in mammographic techniques, leading to higher cure and

survival rates. When this cancer is clini c a l l y localized before nodal

involvement, the rates of survival are higher than after nodal

70
involvement.

7%odal involvement of cancer refers to a neoplasm in which

malignant bones are also included.
 111

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 112

The group of cancer sites with low consistency of 29 percent or

lower were lip, gum, mouth, peritoneum, bone, skin, male breast,

lymphosarcli, Hodgkins and the different types of lymphomas.

The group of sites with high discrepancies between both records

(low percentage in clinical record, high percentage in death

certificate or vice-versa) were, tongue, floor of mouth, small

intestine, rectum, gallbladder, other male genitals and bile pass.

In the case of cancer of the rectum and colon, previous research

has shown that survival rates depend on the stage of the disease at

the time of diagnosis. Persons at higher risk for colon and rectal

cancer are those with familial polyposis, ulcerative colitis, a family

history of this disease, and those who have experienced changes in

bowel habits. These and other important variables, such as lapse of

time between last diagnosis and death, must be studied in future

research.^

Among the average percentage of consistency, only cancer of the

larynx appears in the same group in both documents. Cancers of the

salivary gland and pleura were among the average group according to

the death certificate but in the clinical record they appear in the

classification of 29 percent or lower consistency.

Cn the other hand, cancers of the ovarian tubes and bladder were

classified with consistency around the average (50-59%) but according

to the death certificate consistency is classified 70 percent or

higher.

^Ibid., Schottenfeld and Franmen, Joseph, p. 17.

Unspecific Cancers

Several categories of cancer are classified by the International

Classification of Diseases as ’'undeterminedcode 159, unspecified

digestive organs; code 184, unspecified female genital cancers; code

187, other and undetermined male genitals; and code 189, "other and

unspecified urinary organs." Codes for undetermined cancers together

total 178, representing 4.1 percent of all cases. Of this total, 57

cases correspond to the group of consistent cases and 58 to the group

of inconsistent cases as codified by the clinical records and 63 cases

to inconsistent data codified by the death certificates. Also, a

considerable number of unspecified inconsistent cases coded by the

clinical record were erroneously coded by sex, especially those in

codes 184 and 187 (See Table 27).

One way of reducing this number is by a consistent follow-up

postcard procedure for collecting cause and diagnosis data. The

procedure should include two or three contacts with the physician,

certifier, and hospital or other institution for more than one fiscal

year.

Institution Reporting Death

The information collected from death certificates regarding the

type of institution where death occurred was tabulated because of the

possible relationship of consistency with the "service load." The

inclusion of this variable serves to recommend public and private

policy related to the process of collecting, informing and certifying

death.

Among deaths occurring in private hospitals or private medical

 114

TABLE 27

DISTRIBUTION OF UNSPECIFIC CANCERS BY ORGAN SYSTEM

O’
CODE SYSTEM Nl /c

159 Unspecified Digestive

Organs 76 32.3

184 Other and Unspecified

Female Genitals 24 10.2

187 Other and Unspecified

Urinary Organs 25 10.6

189 Other and Unspecified

Urinary Organs 53 22.6

Total 178 4.12

Source: Appendix I, Table A

^The number of unspecified cases is the sum of unspecified

cases classified as consistent plus the unspecified
inconsistent cases according to each one of the sources.

2 Percentage from the total matched cases (265 divided by

4,351)
 H5

Institutions consistency was 60.6 percent. (This analysis excludes

cases classified under the categories of "others" or "unknown.")

Deaths that occurred in public institutions are in second place with a

53.8 percent consistency rate.

The lowest consistency rates (51.6 percent) were reported for

cases where death occurred at home and in public hospitals (53.8). Out

of all matched cases, the majority of cancer deaths, a total of 2,125,

or 48.8 percent of cancer deaths occurred at home. (See Table 28.)

Such a large percentage must affect the total levels of consistency

between diagnosis and cause of death. A possible explanation for lower

consistencies when deaths occur at home is that the physician does not

have the required clinical facts available to certify the cause of

death. Most often, information is provided by relatives. There seems

to be a need for further research to investigate which factors are

related to the low consistency associated with public institutions and

home deaths.

Person Informing of the Death

This variable was included in the research to provide additional

information as well as criteria for the evaluation of the number of

deaths informed by persons other than a physician (on the

recommendation of the U.S. Department of Health and Human Services).

(See Appendix C.) The "informant of death" is the person who gives

information to complete the demographic portrait of the deceased.

The results of the evaluation of this variable show that

demographic information coded on almost all death certificates was

provided by a relative of the deceased (other than a parent). A total

 116

f TABLE 28

DISTRIBUTION OF CONSISTENT CASES BY TYPE OF

INSTITUTION WHERE DEATH OCCURRED

INSTITUTION CONSISTENT TOTAL

n % N

Private 633 60.6 1,044

Public 598 53.8 1,112

At Home 1,096 51.6 2,125

TOTAL 2,371 54.5 4,351

Sources: Puerto Rico Department of Health, Puerto Rico Cancer

Registry and Death Certificates, 1980 and 1982.

t
of 3,797 deaths were reported by relatives other than parents,

equivalent to 87.3 percent, and only 6.5 percent by funeral agents,

and 6.2 by parents, friends and nurse6. (See Table 29.)

Average consistency was 54.5. Consistency was highest when death

is reported by parents, friends or nurses (65.8 percent). When death

is reported by funeral agents, it is lower (57.5 percent). The

difference was equivalent to 11.0 percentage points. More important

seems to be the fact that consistency drops when death is reported by

other relatives (54.8) and, as observed in Table 29, the higher

proportion of deaths in Puerto Rico are informed by other relatives

(87.3 percent).

Physician Who Certified the Death

Certification of death and the cause of death are always made by

a certified physician or pathologist. However, the physician may

receive second-hand information on the cause of death from another

person, such as a relative of the deceased, causing discrepancies

among records. Among all 4,351 matched cases, the majority of deaths,

a total of 2,581, were certified by the physician who attended the

deceased before death occurred. This number represents 59.3 percent of

matched cases.

Fewer cases, only 14.9 percent, were certified by a physician

who was informed by another person. Following the recommendations of

experts of the National Cancer Institute, we examined the percentage

of cases in which the physician who certified the death was not the

one who attended the patient before death. The percentage was only

25.8 percent for all matched cases.

 118

TABLE 29

PERCENTAGE DISTRIBUTION OF CONSISTENT CASES BY

PERSON WHO INFORMED DEATH

INFORMANT CONSISTENT CASES MATCHED CASES

n 7, N *

Parents, Friends, Nurses 177 65.8 269 6.2

Other Relatives 2,080 54.8 3,797 87.3

Funeral Agents 114 57.5 285 6.5

TOTAL 2,371 54.5 4,351 100.0

Sources: Puerto Rico Department of Health , Puerto Rico Cancer

Registry and Death Certificates, 1980 and 1982.

v
 119
* •

The pattern was as expected: consistency rates were highest for

cases where death was reported by a physician who attended the

deceased prior to death (56.4 percent), a difference of 4.1 percentage

points to consistency among physicians who did not attend the patient

prior to death. Obviously, the physician who previously attended the

patient has more scientific criteria available, more medical knowledge

about the patient, and more access to medical test results and

clinical records.

In second place, as previously mentioned, were cases reported by

physicians who did not attend the patients prior to death, 52.3%. In

third place were physicians informed of death by another person (5C.6

percent). No cases were reported without medical certification (Table

30). It is important to mention that differences in consistency were

not marked when death was informed by a physician who had not attended

the deceased or a physician informed by other person.

Basis For Diagnosis

Using the patients' clinical records, the basis, or source, for

each diagnosis was evaluated to determine the number and distribution

of consistent cases scientifically confirmed by physicians using such

techniques as histology, hematology, citology and X-ray, bone marrow,

and autopsy. The death certificate was added as a source, although it

is not a "technique" per se.

The death certificate was included because it is used as a

primary identification source to locate the clinical record of a case.

In the official procedures followed by the Cancer Registry Program in

< coordination with the National Institute of Cancer of Maryland,

 TABLE 30

PERCENTAGE DISTRIBUTION OF CONSISTENT CASES

BY"TYPE OF PHYSICIAN

TYPE OF PHYSICIAN n % N

Physician Attended Deceased 1,456 56.4 2,581

Physician Did Not Attend Deceased 588 52.3 1,124

Physician Informed by Other Person 327 50.6 646

TOTAL 2,371 54.5 4,351

Source: Puerto Rico Department of Health, Puerto Rico Demographic

Registry, 1980 and 1982.
personnel also use the death certificate to ascertain identification

characteristics of a case, such as doctor's name, place of treatment

and municipality. Personnel then request a clinical record for the

case by mail in order to complete data and codify the cause of death.

If by the end of the fiscal year no other source is found through the

follow-up process, the cause of death certified by the physician is

the one that is used to classify the primary site, and is, therefore,

the "source" of the diagnosis.

The results in Table 31 reveal that most of the matched cases in

the study (3,300 cases) were confirmed by a positive histology,

equivalent to 75.8 percent. The second highest number of cases were

those where the source for the diagnosis was the death certificate

(419 cases or 9.6 percent).

The consistency of data based on diagnostic techniques is

examined in Table 31. Consistency was almost always above the average

(54.5) except for histology procedures, which were 52.7. Consistency

varies from a high of 82.8 percent for cases diagnosed by clinical

diagnosis only to 61.9 for exploratory surgery procedure.

Among the cases diagnosed using a histology test (biopsy), a

total of 1,73c cases, or 52.7 percent, were consistent. Using an X-ray

procedure, a total of 116, or 65.2 percent, were consistent. When only

a death certificate was used to obtain the clinical diagnosis, the

consistency rate between the two documents was also high, 419 cases,

equivalent to 75.4 percent. Obviously, this result is biased, since

many of these records are coded simply using the same site as the one

coded in the death certificate. However, it is important to evaluate

 TABLE 31

PERCENTAGE DISTRIBUTION OF BASIS FOR DIAGNOSIS

FOR CONSISTENT CASES, PUERTO RICO

BASIS FOR DIAGNOSIS1 CONSIS TENT TOTAL

n Z N %

Positive Histology 1,738 52.7 3,300 75.8

Positive Cytology
Not His. 36 75.0 48 1.1
Autopsy With Microscopic 29 69.0 42 1.0
X-Ray 116 65.2 178 4.1
Exploratory Surgery 13 61.9 21 .5
Clinical Only 101 82.8 122 2.8
Death Certificate 0nl>~ 316 75.4 419 9.6
Total 2,371 54.5 4,351 100.0

Source: Puerto Rico Department of Health, Puerto Rico Cancer Registry

and Death Certificates, 1980 and 1982.

^Basis of diagnosis was coded according to the Cancer Registry

clinical record. Consistency percentage for bone marrow positive
hematology, positive cytology, autopsy without microscopic and other
microscopic tests were not considered in the table because of the few
cases reported in the study.

^Tiie deatV. certificate is used as a first hand identification source

in order to locate the clinical record of patients. A follow-up is
made in relation to the hospital, physician's office or other
institution where the patient was treated and after this the basis of
the diagnosis was coded. If the case is not identified the cause of
death is used to codify the clinical diagnosis.
 123

this situation in further research because results do not show 100%

consistency. It seems to be that something is happening in the process

of coding the information from the death certificate to the clinical

record.

This is so because the death certificate is used as a first-hand

identification source to identify and locate the clinical record of

the patient throughout different institutions on the Island. After use

of the death certificate, a follow-up is made by personnel of the

Cancer Registry in relation to hospitals, physician's office or other

institution where the patient was treated and, after this, the basis

of diagnosis is coded. If the case is not properly identified the

cause of death is used to codify the clinical diagnosis.

A good criterion for future research must be capable of

measuring the number of cases and proportion of cancer records that

are coded in this way on a yearly basis. It is interesting to observe

that after the subtraction of 316 consistent cases using the death

certificate as a source to codify the diagnosis from the total

consistent cases (2371 - 316) the average consistency drops to 47.2

percent. This fact may be taken as evidence of the need for further

systematic evaluation of this issue because the death certificate is

used as the source to codify the diagnosis on the clinical record in

10.0 percent of the total number of records, which is a considerable

proportion of the whole data.

The findings discussed above are an Indicator of the reliability

and quality of the diagnoses established in the cases collected by the

Puerto Rico Cancer Registry. However, further research is necessary to

evaluate other factors affecting the consistency of cases diagnosed,

for example, by a histological method or biopsy. The extent of the

disease at the tine of diagnosis and the time between the last

diagnosis and death m ay give insights into the relationship of

survival rates and consistency.

Region of Death and Consistency Percentages

To examine consistency rates for deaths according to

geographical area, matched records were distributed into the

Demographic Registry's seven regional area classifications. The

highest number of deaths for all matched cases in both years were

registered in the San Juan Metropolitan and Ponce regions. (See Table

32. )

The lowest consistency percentages among records were from the

Aguadilla and Arecibo regions, with 48.4 and 49.0 percent,

respectively. Consistency percentages were similar for all other

health regions, with BayamSn at 54.6, Ponce at 55.3, and the San Juan

Metropolitan region at 56.6. In all regions, except for Aguadilla and

Arecibo, the number of consistent cases was greater than the number of

inconsistent cases.

Further research is necessary for these regions in order to

study the association of the chief variables which affect consistency

in various regions, and to find the particular variables associated

with the low consistency percentages, such as informant of death, the

basis for dianosis and the institution where death occurred.

 TABLE 32

PERCENTAGE DISTRIBUTION OF CONSISTENCY

BY REGION OF DEATH

REGION CONSISTENT TOTAL

n Z N

Arecibo 168 49.0 343

Sub-AgAiadilla 88 48.4 182
Bayam6n 261 54.6 478
Caguas 260 51.6 504
Mayagtiez 183 53.3 343
San Juan Metropolitan 990 56.6 1,740
Ponce 421 55.3 761
Total 2,371 54.5 4,351

Source.* Puerto Rico Department of Health, Puerto Rico Cancer Registry

and Death Certificates, 1980 and 1902.
 CHAPTER VI

CONCLUSIONS AND RECOMMENDATIONS

Conclusions

This study's review of previous research into measurements of

consistency and quality of cancer data reveals that no research

sources are in complete agreement in terms of definition of concepts

and none present a well-defined methodology for systematically

assessing the accuracy of data. These studies employee a variety of

concepts and methods to measure consistency among autopsy results,

clinical records, and death certificates. The differences among their

findings result from the different and exclusive variables used.

The variety of concepts and methods limit the researcher's

ability to rigorously evaluate consistency of available mortality data

as a whole. It also makes it difficult to compare results among the

studies, and to compare results with the findings of this research.

In general, the review of previous researcn suggests the need for more

comprehensive studies in the future.

Various studies did reveal that the comparison of data

collected from two major sources, cancer registries and death

certificates, is an excellent method to analyze consistency of cancer

data. Most registries provide comprehensive cancer incidence data by

tumor site, age of the victim, geographic area, and other important

demographic and medical data. These two sources, therefore, were

chosen for this study to analyze cancer data in Puerto Rico.

Puerto Rico's Central Cancer Registry records include more

informs * i on than do Puerto Rico death, certificates, since death

certifi rates are p rim a rily concerned with time of death, however,

death certificates provide certain unique and v a l u a b l e infcnrat ior..

Both do: clients are ext r e m e l y important as research cancer date

sources; they serve as vehicles for the clinical and epidemiologic

i nformation for reseercr.

Previous research studies oc net lead to definitive con:luster

about the quality or medical cerci f s cation on ceat'r. certificates.

Cuality varies greatly e:cording tc cause of death, country, e-d ctr-e

characteristics, arc nary large discrepancies are evident between the

diagnoses certified or. death certificates arc these re per ted by

autopsy and hospital records. The ocs: important finding related t:

this issue was that very little is known about the quality of medical

certification and its effect or. diagnostic statistics and on rational

cause c: death statistics, both ir general arc ir. particular.

Using data fron both Cancer Registry records arc reiatec death

1 r T* i I 4 ' - t 6t . tr:i£ S t o C' £ V £ » U £ * 6'£ £\S 1*5 T -r C a TK £: T * T. T ;■ iTHc 1 1 1 7 I. "

•uertc Ri cc : cr 19 5-1 arc 19:1. measures tr.e relttitr.sr.it betve e*

out factors and cats consistent; , arc gives \ sritu; rtir.tarr

use of the information. ir future research.

Available data ir. Puerto Rice shows that the overall

consistency for the 4,351 matched cancer records reviewed is 54.5

percent. After a subtraction from the total consistent cases of the

number of lymphoma cancers codified differently by the Cancer Registry

and the Demographic Registry, percentages of consistency increase t

only 56.0 percent, 1.5 percentage points higher. This level of

consistency or agreement vas lev in c o m p a r i s o n to other study resul

(Aldrrson and Meade, !9fcT - 6C.C percent and Percy. 19'?. - 8 t . 7

p e r c e n t ).

The di screranc let between this study and these of A!censor, a

Meade and Gittlesor., e t . al. might be e x p l a i n e d by differences in

research design. Our study included m a t c h e d records iron all cancer

deaths, while tress two studies included only recorcs c: o a t ier.es v

died ir. ncspitsls. Our findings are that 4£.£ r-ercer: c: center dee

in Puerto Fire occur ir. the home. By e l i m i n a t i n g the here cast:,

proportion of total cancer deaths, the A l o ersor and Meade and

Gitrlesor. studies impose limitations or. their data, which may exrla

the differences ir. our f i n d i n g s . To test this assumption, we

calculated the percentage of consistency for hospital deaths only ir

Puertc Rico. Or this basis, the consistency rating vas Percent

little closer tc the findings of the A l c e r s o n and Meade study.

A variety or interesting findings were relatec tc the set:

variable. Tara centos: rate that percenta ges of ccr.sc sre* :y cr Puert

Rice were nigner aaotu rale cases tnsr aeon: fera Is esses Tr..;

tirc.r.c agrees ».:r other research results <Bor.se r an: Tr teas . Irtr;

Garcia R a l c i e r i , 19c 5; wrier report high levels of inconsistency for

females. It has beer argued that different degrees of complexity of

certain canc e r s are sex-related.

When age and sex are considered together in the over 65-year

age group, discrepant codings or inconsistencies are associated more

with females than with males. On the other hand, inconsistencies are

higher for younger ages and lower for older groups. In part this

result is explained because the fact that lymphomas, the leading

cancer among younger groups, are codified differently by the Cancer

Registry and by the Demographic Registry, may create a mismatch

between data.

After the subtraction of lymphomas by specific age group the

younger age group continues to be the group with the high

discrepancies.

In conversation with the personnel at the Cancer Registry, they

explained that they are aware of the situation, but they are not

making any effort to change procedures to eliminate differences in

their codification and that of the Demographic Registry.

In regard to the sex variable, we conclude that more attention

should be given to procedures used in detection, collection and

codification of cancer among females. Other factors bearing on female

cancer mortality rates must also be taken into consideration in

evaluating consistency of female cancer data such as the type of

cancer, the timing of the screening of the disease and the extent of

the disease.

An important part of this research was the evaluation for

consistency among records by cancer site. In the cross-classification

presented in Table 26, results show that the very lowest consistency

groups in both documents Include skin, lip, gum, mouth, peritoneum,

bone, skin melanoma, male breast, lymphosarcoma, Hodgkins, lymphomas.

Thus, a follow-up consistency study must include those cancer sites

with low consistency percentages because they are the principal

specific causes of deaths in Puerto Rico (See Chapter III).

The analysis also revealed narked discrepancies between sources

of cancer data in the codification of several specific cancer sites:

bile pass, tongue, floor of mouth, small Intestine, rectum, gall

bladder and male genitals.

Region of death, whether institution or home, has a bearing on

consistency ratings. An association was evident between private

institutions and at-home death and consistency. Our findings support

a recommendation that hospitals and private physicians adopt a routine

procedure of giving an out patient or his or her relatives a copy of

the latest clinical diagnosis. This practice may help the physician

who certifies the death at home to make a more accurate final

diagnosis for the certificate. This research also suggests evaluating

the differences in diagnosis and cause of death reported in both

public and private hospitals.

Deaths are primarily certified by the physician who attended

the patient prior to death, yet consistency for this category was only

56.4 percent. Marked differences were not found with other types of

physicians who certified the death. These findings point to the neec

for continuing training of physicians, emphasizing the difficulties

inherent in collecting, codifying and analyzing data due to

imprecision of death certification. This suggestion should be

initiated after reviewing a sample of records with significantly high

discrepancies in order to have typical examples of cases using

different cancer sites.

 E ven though the a i m of this project is not to evaluate the

quality of clinical diagnoses, the type and quantity of source used

are criteria to rate and measure the quality of diagnostic

information, as other resea r c h has suggested (Chapter I).

The fact that the m a j o r i t y of the ma tc h e d cases included in the

study were confirmed by a positive histology (75.8 percent) and other

techniques, such as bone m a r r o w and x-rays, suggests that the quality

of Cancer Registry data in Puerto Rico is v e r y good and indicates that

it is the most m eaningful source for tracing cancer trends.

When diagnosis was performed using onl y clinical data,

consistency increased to 82.8 percent. It seems to be an important

source of variation of consistency: a difference of 30.1 percent

points is shown between this procedure and the histological technique.

From the standpoint that the quality of Cancer Registry data or

diagnosis is very good, it seems to be desirable to evaluate in

further research cases in w h i c h evidence of a h i s tology appeared

because consistency for these cases was only 52.7 percent.

Other variables should also be investigated, for example, the

progress of the disease after the histology, and the time from the

last diagnosis to death. The results of the e v aluation of the

procedures used to code the clinical diagnosis also sho w that a

positive cytology and auto p s y are good means of improving the accuracy

of the assignment of the underlying cause of death, since 75.0 and

69.0 percent of cases were consistent wit h the diagnosis of the

clinical record.

Observations can be made regarding particular geographical

areas or regions covered in the study. P articular p r o b l e m s seem to be

occurring in the codi f i c a t i o n of death in the region and sub-region of

Arecibo and Aguadilla. Data for these two cities hav e the lowest

consistency ratings for the island. However, d i f f e r e n c e s w ith other

municipalities are not really important. A more d e t a i l e d study should

be performed on a sample of c l i n i c a l records and d eath certificates

from these two m u n i c i p a l i t i e s in o rder to evaluate factors intervening

in tne process of reporting statistics. This e v aluation should assess

tne use and availability of m e d i c a l and technical tests and facilities

at the hospitals in these two health regions. Also a complete querying

process for both data systems is necessary.

Reco m m e n d a t i o n s

The aim of this study was tc investigate whether the diagnose

reported in the clinical records of cancer patients agree with the

causes of death reported on their death certificates. It was also

intended to provide information to students, researchers and

government authorities about the consistency and a c c uracy of cancer

data in Puerto Rico, and to h e l p in delineating an appropriate

me t h o d o l o g y for future evaluation of data. Results show a low

c o n s i stency between these documents, compared to results of other

studies in other countries.

The Central Cancer Registry, and, especially the Demographic

Registry, should regularly investigate collection, c e r t ification and

coding procedures used to report cancer sites. A comprehensive study

should select further samples of ma tched records, correlating other

factors to ensure a proper e v aluation in measuring their consistency

The results of this type of research thus far reveal the need

for study of specific types of cancers (cancer sites) in w hich

discrepancies in codification between the systems were the most

significant. The research should be controlled by such variables as

sex (specifically, tc investigate the inconsistencies reported in

r ecords of female cancers), age (specifically in differences between

the younger age category from 0 to 24 and the g r o u p of 65 years or

more), basis of diagnosis, region of death, institution reporting

death, cases w i t h histologic confirmation, time and stage of last

d i agnosis and time of death, and extent of the disease.

 It Is ext r e m e l y important that physicians be trained on a

continuing basis to be aware of the importance of their medical cancer

information and the requirements for a good quality of both

documents. We believe that if a follow-up procedure is instituted for

those cancers wit h h i g h discrepancies, the resulting incidence and

mortality statistics w o u l d be more accurate.

Also, we suggest the need for a study in w hich the codification

of records in both systems is evaluated. This study should include a

sample that uses all the possible variables affecting the coding

process. It is of primary importance to eliminate the difference in

the codification of lymphomas. It is necessary to use three

independent coders, working with the same sample to implement a formal

verification system for the codification by the first coder; that .is,

three different coders should simultaneously codify the same record

sample. The three sets of codifications should then be matched,

making it possible to identify the principal places where coders

commit the most errors and in w h i c h discrepancies are highest. Wit h

the help of experts, a discussion of the logic and rules to be

followed by the coders will help them to arrive at a standardized

codification process.

Even when a small number of cases were wrongly codified by sex,

it is recommended that the factors that contributed over a period of

time to the erroneous codification should be studied. W e suggest

approaching this aspect cautiously, evaluating cancer sites using four

digits of the International Classifica tion of Diseases of Oncology.

This strategy m a y help to go into the more specific cancer site

 135

analy s i s Involved in this issue. M a l e cases codified as unspecific

cancers should also be evaluated. We suggest that a compu t e r program

to validate the sex consistency by cancer sites be implemented

promptly.

Finally, the statistical systems of both the Demographic

R e g i s t r y and the Cancer Registry in Puerto Rico require a careful

evalu a t i o n of original data procedures of both h o spitals (specifically

public hospitals) and physicians, including feedback from

administrative personnel and data analysts, to a s certain that the

correct questions are being posed and answers received. The follow-up

procedure recommended above will verify the accuracy of both data

systems. Altho u g h it is understood that d e t e rmination of the primary

c ancer site is the physician's responsibility, specific operational

rules, continuous follow-up and follow-up procedures that cover all

participants in the pro _-dures are needed in order to ensure accuracy

and high consistency ratings.

It is important to not lose sight of the fact that there are

other factors affecting consistency rates of data, such as trends in

c ancer cure, survival rates and changes in risk factors. Improvement

in cancer detection and treatment techniques may a lso increase

survival rates for specific sites. Future research should focus on

evaluating the relation of these factors to mo r t a l i t y trends and

consis t e n c y of source data.

APPENDIXES

136
 137

APPENDIX A

DE P A R T M E N T OF HEALTH, CANCER CODING FORM

1. PATENT IDENTIFICATION COL

1. Patient'! Registry Number 2 2 5- 2 14

L Sequence of Cancer and Card Number <9 i 74

3. Patient's Name
i— r
N T 937
^ I L
4. Social Security Number

5. Sex 1. male 2. female 9. unknown

TTffttr 38-46

47

6. Birth Date 4451

7. Municipality of Birth 52 53

8. Occupation 54 56

S. Marital Status 57

10. Patient's Residence £3 58 5?

11. Residence Zone 1. urban 2. rural 9. unknow n 60

12. Primary Site 61 bt

f
66-70
13. Histological Diagnosis 21
14. D-apnoiis Hospital Record Number 71 77

15. Statuf oi Patient 1. alive 2. dead 9. unknow n 9 78

Change Code l 51 60
 138

c
IV. LAST CONTACT CAT A COL.

1. Patient's Registry Number 1-ft

2. Cancer Sequence and Card Number 7-8

1 Date of Last Follow-up 9-14

iliJi
15-16
4. Condition of Patient at last .Follow-up
2 17*18
5. Follow ed Institution

ft. Follow-up Doctor 7023

7. Follow-up M edial Record Number 24-33

ft. Date of Death

9. Autopsy done 1. yes 2. no 9. unknown

u \J
31-36

37

10. Autopsy diagnosis 38

11. Cause of Death According to Certificate (Diagnosis) 39-42

i \ m ¥
12! Death According to Certificate 43

13. ICO Code Used for Cause of Death 44

14. Administrative Codes —Type of follow-up 45

15. O in ia l Abstract Received 1. yes 2. no 9. unknown 46

16. Biopsy Report Received 1. ye* 2. no 9. unknown 47

17. Death C ertifiate Received 1. yes 2. no 9. unknown 48

IS. First information Date 49-54

19. First Information Document 55

20. First Information - Condition of Patient 56

21. Coded By
Wt
73-78
22. Date c2 ? t3
: i Reviewed By 79

Change Code T £0
 a p p e n d ix b

! Si!

i.

Dull
¥H J

■
lOMvmM v u u m o rrmaoftvii ia sw a n W urrw w omurao xn ujuu«a> oueavooa tin
 PARA KR LLENADO POR EL INFORM ANTE PARA PROPOSITOS ESTAINSTICOS EX< UJSIVAMENTE

m
1
m
ft
□0

□□□

S i-J

□ □
m
M
O
i
i
i •I
140
 141

c APPENDIX C

LETTER FROM THE BIOMETRY BRANCH

DEPARTMENT O f HEALTH k HI'.MAN SERVICES *vbi« h #»wi Saw n

Htoonsi (Aatitwtm o< H«»na

NanoAW C ancar to tu tw u
I l l M K i M«ryian« J 0 J C 5
S eptem ber 1 2 , 1984

Ms. Evelyn Laureano

P .5. Box 3715. Caroline
Puerto Rico 00830

Oeer Ms. leuresno:

Thank you for your le tte r o f August 28 asking for u t e r l a l related to you"
tn esls proposal. I saw Mary Powers 1n Philadelphia a few weeks ago and she gave
ee an Idea of what you would be doing. 1 ae enclosing reprints describing two
studies coopering death c e r t if ic a t e diagnoses with corresponding hospital
diagnoses for cancer p a tien ts. This w ill give you soae Idea of sooe o f the
issu es others have encountered in dealing with th is problea.
I ae a lso enclosing a copy o f one of the annual reports free the Puerto
Rica Cancer R egistry. One of the prob le ss we have encountered with the Puerto
Rican a o r ta lity data is that in a nuaber of instances the cause of death 1s
supolied not by a physician but by a fa a ily nesber. In sooe o f these cases for
which cancer i s given as the cause of death, there is no evidence e f a previous
report of the case to the r e g istr y . Thus, we are not certa in that th is is
indeed a cancer c t s c . This w ill certain ly present you with an in ter estin g
probles to deal with In your th e s is research. I t Bight be helpful i f you talked
with Dr. Isidro Martinez, who Is the Principal Investigator on our SEEK Registry
project in Puerto Rico. His address is as fo llM s:
Cancer Control Prograo
Department o f Health
Rox 9342 ____
Santurce, Puerto Rico 00908
Telephone: (809) 751-8160
If you have any sp e c ific questions, I would be happy to hear froo you.

Siocerely yours,

Earl S. Pollack, Sc.O.

Chief, Biometry Branch

Enclosures

C
 142

f APPENDIX D

UNSPECIFIED CODES AND GLOSSARY

Unspecified Codes

Code Number Site

159 Unspecified digescive organs

184 Unspecified, other female genitais

187 Unspecified, other male genitals

189 Other and unspecified organs

Glossary

1. Biopsy: the removal from a living body and examination,

usually microscopic, of tissue or other material, for

purposes of diagnosis.

2. Cancer: a disease generally characterized by the

progressive growth of abnormal cell populations. The early

cellular and molecular events of the disease and the

mechanisms leading to its initiation are not fully

understood. In most cases of cancer, unrestrained cell

growth leads to the development of tumors which compress,

invade, and/or destroy normal tissues.

3. Cancer rate: the number of persons dying of cancer during a

selected year, divided by the total population of that year.

Completeness of registration: the percentage or number of

cancer cases for which only death certificates exist.

Consistency: for the purposes of this study, the number and

percentage of cases that show agreement between the death

certificate code for the underlying cause of death and the

code used in the patient's cancer record.

Etiology: The study of disease causation in the fields of

pathology and biology.

Histology: the science of examining tissues using

pathological and microscopic techniques.

Incidence: the proportion of new cases of a specific

disease per 1,00C inhabitants in a specific timespan,

generally one year.

International Classification of Diseases for Oncology

(ICD-O): an extension of Chapter II (Neoplasms) of the

Ninth Revision, International C?assificatin of Diseases

(1CD-9). ICD-C allows coding of all neoplasms by

topography, histology, morphology and behavior (malignant,

benign, in-situ of uncertain behavior, or metastatic).

Medical certification of death: a certification made only

by a qualified person, usually a physician, medical

examiner, or coroner.

Prevalence: the proportion of all cases of a specific

disease per 1,000 Inhabitants.

Underlying cause of death: the condition that initiated the

sequence of events resulting in death; the cause coded on

 144

the death c e r t i ficate as Item 19-C.

13. Primary site: the Identification of the site of origin of

the cancer and not a metastatic site, as stressed or

defined by the Cancer Registry. If a new report is received

by the Registry about the origin of the cancer, the

patient's record is evaluated and updated.

14. The definitions of the basis for diagnosis include the

following:

a. Positive histology — the positive result of a

biopsy or evaluation of tissue, giving a

microscopic confirmation of cancer.

b. Positive hematology — a positive result of the

evaluation of a blood sample, confirming the

p resence of cancer.

c. Bone n a r r o w — a positive result of a microscopic

evaluation of the bone marrow.

d. Positive cytology without h i stology — a positive

result of a microscopic evaluation of cells, their

origin, structure, function and pathology, without

a h i stology having beer, performed previously.

e. Positive cytology - negative histology — the

c o m b i nation of a biopsy or h i s tology negative

result with that of a c y t ology w hich has a positive

result. Sometimes because of the type and origin of

the tissue included in the bio p s y the result is

negative, but the e xam of the cellular structure

will be positive.

Autopsy with m i c r o s c o p y — an autopsy with

microscopic confirmation, which includes biopsy or

cytology.

X-ray — a diagnostic tool based on the use of

radiant energy and radioactive subforce to

determine cancer causes, such as leukemia and

breast. This diagnosis is clinical, without

microscopic confirmation.

Exploratory surgery — Surgery performed so that

the physican can observe the patient without a

sample of tissue or microscopic examination.

Clinical only — according to the P.R. Registry,

the receipt of the p a t i e n t ’s clinical form, its

evaluation and taking out of the final diagnosis

performed only by a physician as processed by

personnel in charge of clinical records (See CC-<+

form in the appendix). These cases do not include

any evidence of pathology or microscopic exams. The

physician's diagnosis, based cn a physics!

examination of the patient, is the only evidence.

Usually the SEER program brings these cases back to

Puerto Rico for a second vie w of the record.

Death certificate only — Used the death

certificate as the only source of information —

only when "follow-back" activities have produced no

other medical reports. Often a case Is reported

first via the death certificate, but later registry

action yields missing or additional medical

reports. The high number of such cases reported by

the P.R. Registry has been criticized by the SEER

program, but because of many internal problems,

such as inadequate budget and lack of personnel to

perform all the tasks, this situation has continued

through the years.

Autopsy without microscopy — a positive finding in

an autopsy without a microscopic evaluation.

Other without microscopic NOS — A diagnosis

recorded but without a report of a specific

procedure. Procedures other than a biopsy or

hematology, etc., probably have been used; such as

sonogram, CT-scan, computerized tomography or

cholongiogram.
 APPENDIX E

ESTIMATE OF LYMPHOMAS CANCERS

After the run of data by the computer, the results show that the

lymphomas were codified differently by the Cancer Registry and by the

Demographic Registry, The Cancer Registry uses only code number 196 to

codify all lymphomas and four digits to specify the type of lymphomas.

Because the methodology used in this research includes only a three-digit

analysis, the four-digit specification was missing. The Demographic

Registry has a total of ten three-digit codes to codify lymphomas. These

different ways of coding lymphomas make consistency results misleading.

Because lymphomas (code 196) were included in code group 190-199, an

estimate of the number of cases codified under code 196 was calculated.

The procedure was to apply an average of the proportion of the total new

cases (incidence) codified under this code in 1980 and 1982 (a total of

1,980 cases) and already published by the Health Department to the total

number of inconsistent cases. This was equivalent to .0458.

The results show that;

.0458 x 1,980 ■ 90.7, or 91 cases were codified as lymphomas (code

196). This number of cases was subtracted from a total of 1,980

inconsistent cases, that is: 1980 - 91 ■ 1,889 inconsistent cases, giving

the following percentages:

55.7 ■ 2,371 consistent cases;

44.3 ■ 1,889 inconsistent cases; Total 4,260.

 148

APPENDIX F

ESTIMATE OF LYMPHOMAS CANCER BY AGE

Because of limitations on the already tabulated data, an

estimate of the number of lymphomas codified by age by the Cancer

Registry and the Demographic Registry was performed. The procedure

consisted of applying an average of the proportion of cases codified

in codes 196 and 20C-209 by specific age and already published by the

Puerto Rico Health Department for 1980 and 1982.

The proportions applied were the following:

Age Proportion

0-24 .20215

25 - 44 .05277

45 - 64 .03158

65 or more .04430
 149

APPENDIX G

TABLE A

PERC E N T A G E DISTRIBUTION OF CONSISTENT ANT

INCONSISTENT CASES BY PRIMARY SITE OF CANCER

CONSISTENT INCONSISTENT* TOTAL

Number in Clinical
Records
0/ c, V
IODE SITE n /* n /t

140 Lip _ __ 7 1 00.c

141 Tongue 31 28.7 77 71.3 106
142 Salivary Gland 1 8.3 11 91.7 12
143 Gum 9.1 10 90. 9 11
144 Floor of Mouth / 17.5 33 82.5 40
145-149 .Mouth, Other 42 17.8 194 82. 2 236
150 Esophagus 213 69.4 94 30.6 307
151 Stomach 362 67.8 172 32.2 534
152 Small Int. Inc. 5 21.7 18 78.3 23
153 Large Int. E x c . 132 63.2 77 36.8 209
154 Rectum 43 26.7 107 71.3 150
155 Bile Fass 78 77.2 23 22.8 101
156 Gallbladder 33 26.6 47 73.4 64
157 Pancreas 133 74. 7 45 25.3 178
158 Peritoneum — — 11 100.0 11
159 Unsp. Digest. 14 56.3 10 41.7 24
160 Nose 6 23.1 20 76.9 26
161 Larynx 54 54.5 45 45.5 94
162 Trachea, Bronc. 386 80.0 96 20.0 482
162 Pleura 1 20.0 4 80.0 5
164 Thymus 2 5C.C n 50.0 U
17U Bone 2 6.7 28 93. 3 3C
■5 —
O • e,
171 Connective Tissue ii 25; 6 74.4 H-
172 Skin, Melanoma — — 100.0 *5
173 Skin, Other 3 5*5 52 94. 5 55
174 Female Breast 192 73.6 69 26.4 261
175 Male Breast — — 1 100.0 i
179-182 Uterus 56 29.2 136 70.6 192
183 Ovary, Tube 33 56.9 25 43.1 58
184 Other and Unsp. 9 45.0 11 55.0 20
185 Prostate 262 80.4 64 19.6 326
186 Testes 2 66.6 1 33.3 3
187 Other Male Gen. 7 29.2 17 70.8 24
188 Bladder 66 50.8 64 49.2 130
189 Other and Unsp. 27 57.4 20 42.6 47
190-199 Other and
Unsp. Site 157 31.4 343 68.6 500
 150

i TABLE A (Cont'd)

PERCENTAGE d i s t r i b u t i o n o f c o n s i s t e n t a n d
INCONSISTENT CASES BY PRIMARY SITE CF CANCER

CONSISTENT INCONSISTENT*
CODE SITE n n

200 Lymphosarcoma
and Rectum 3 100.0 3
201 Hodgkins Disease 1 100.0 1
204 Lymphatic Leukemia — 7 10C.0
TOTAL All Cancers 2,371 54.5 1,980 45.5 4,351

* Inconsistency percentage distribution was calculated according to

clinical records collected by the Cancer Registry. A total of forty
four (44) categories were compared. Five (5) site categories were
excluded because no cases were reported under codes 202, 203, 205, 206,
and 207 - 209.

Source; Puerto Rico Department of Health, Puerto Fico Cancer R e g i stry and
Death Certificates, 1980 and 1982.

c
 151

TABLE B

PERCENTAGE DISTRIBUTION OF CONSISTENT ANT

INCONSISTENT CASES BY PRIMARY SITE OF CANCER

CONSISTENT INCONSISTENT* TOTAL

Number in Death
Certi ficates
O/
CODE SITE n /© n % N

140 Lip 7 100.0 7

141 Tongue 31 70.5 13 29.5 44
142 Salivary Gland 1 50.0 1 50.0 <*\
143 Gum 1 2C.0 4 80.0 5
144 Floor of Mouth 7 100.0 — — 7

145-149 Mouth, Other 42 29.4 101 70.6 143

150 Esophagus 213 64.0 120 36.0 333
151 Stomach 361 79.7 92 20.3 454
152 Small Int. Inc. 5 71.4 '1 28.6 ->
153 Large I n t . E x c . 132 62.6 79 37.4 211
154 Rectum 43 79.6 11 20.4 54
155 Rile Pass 78 39.6 119 60.4 197
156 Gallbladder 33 83.0 7 17.0 40
157 Pancreas 133 79.6 34 20.4 167
158 Peritoneum — — 4 100.0 4
159 Unsp. Digest 14 21.2 52 78.8 66
160 Nose 6 66.6 3 33.3 9
161 Larynx 54 50.0 54 50.0 108
162 Trachea, Bone. 386 80.2 95 19.8 481
163 Pleura 1 50.0 1 50.0 2
164 Thymus o 66.6 1 33.3 3
170 Bone 2 13.3 13 86.7 15
171 Connective Tissue 11 40.7 16 59.3 27
172 Skin, Melanuma ~~ -- 10 100. 0 1C
173 Skin, Other 3 13.0 20 87.0 2 15
17- Female Breast 1 92 96.0 p 4.0 /-jf
175 Male Breast — — 2 100.0 *■>
1'9-181 Iterus 56 HI . 8 78 58.2 13-
183 O v a r y , Tube 33 73.3 12 26.7 45
184 Other and Unsp. 9 69. 2 4 30.8 13
185 Prostate 262 78.9 70 21.3 332
186 Testis 2 50.0 2 50.0 4
187 Other Male Gen. 7 87.5 1 12.5 8
188 Bladder 66 86.8 10 13.2 76
189 Other and Unsp. 27 81.8 6 18.2 33
190-199 Other and
Unsp. Site 157 22.4 543 77.6 700
 152

TABLE B (Cont'd)

PERCENTAGE DISTRIBUTION OF CONSISTENT ANT

INCONSISTENT CASES EY PRIMARY SITE OF CANCER

CONSISTENT INCONSISTENT* TOTAL

CODE SITE n n Z K

200 Lymphosarc and

Rectum _ —
35 100.0 35
201 Hodkins Disease — — 32 100.0 32
202 Lympnoma,
__
Other Forms 56 100.0 56

VO 'O
203 M u l tiple Mychons — — 89 100.0 89
204 Lymphatic Leukemia — — 39 100.0 39
205 Myeloid Leukemia — — 81 100.0 81
206 Monocitic Leukemia — — 3 100.0 *5
207-209 Others — — 57 100.0 57
TOTAL All Cancers 2, 371 54.5 1 ,930 45.5 4,351

Source: Puerto Rico Department of H e a l t h , Puerto P.ico Cancer Regist ry

and Death C e r t i f i c a t e s , 1980 and 1982.

* Inconsistency percentage distribution was calculated a ccordingly to

death recorded by the Death Certificate.
 153

APPENDIX J

UNSPECIFIED CANCER CASES BY AGE

CODE CO NSISTENT INCONSlSTENT(l)

SITE MALE FEMALE MALE FEMALE

159 Unspecified 9 5 5 5
Digest. Organs
18^ Other and Unspec. 9 58 6
Fern. Genit.
187 Other and Unspec. 7 16 1
Male Genit.
189 Other and Unspec. 18 0 1C 10
Urin. Organs
i 68 23 89 22

Cl) Inconsistent cases were categorized according to the

classification of the Cancer Registry. Notes the number of feirale
cancer codified to males.
9
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(
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 158

Evelyn Laureano

B. A., University of Puerto Rico

M. P. A., University of Puerto Rico

M. A. , Fordham University

Consistency of Cancer Sites Recorded at the Cancer Registry

and on Death Certificates in Puerto Rico

Dissertation directed by Douglas T. Gurak, Ph.D.

To evaluate the consistency of cancer mortality data in Puerto

Rico, the underlying causes of death coded on 4, 351 death

certificates of 1980 and 1982 were compared with the primary site

diagnoses listed on the corresponding clinical records filed with the

Puerto Rico Central Cancer Registry.

Comparing the diagnoses recorded by the two data systems

permitted an evaluation of the sources of variation affecting

consistency, such as the patient's demographic characteristics, basis

of diagnosis, informant of death, region of death and the type of

doctor who certified the oeatn.

Using the first three digits of the International

t
Classification of Diseases (1979) for comparison, the consistency

between causes-of-death stated on death certificates and medical

records diagnoses was 54.5 percent. Among the chief sources of

variation in consistency was the basis for diagnosis, age, person

(
 159

Informing death, institution, region of death and type of physician

who attended the patient. Most clinical cases were diagnosed or

confirmed by scientific tests. However, discrepancies are higher for

those records in which diagnoses were based on bone marrow and

positive histology techniques.

This research lea to two major recommendations. First, Puerto

Rico's vital statistics systems should rigorously investigate the

factors associated with high discrepancies between certain specific

cancer sites, such as tongue, floor of mouth, small intestine, rectum

and gall bladder. In addition, local and federal authorities should

devise a standardized methodology for the continuous evaluation of

consistency between cancer cause-of-death statements and clinical data

in order to provide accurate information to users of cancer data both

in Puerto Rico and in the United States.

 160

VITA

Evelyn Laureano, daughter of Ramdn Laureano and Marfa T. Osorio,

and the wife of Professor Etiony Aldarondo, was born March 15, 1951 in

Carolina, Puerto Rico. She attended the University of Puerto Rico,

where she received the degree of Master of Arts in Public

Administration in May 1973.

She entered Fordham University in September 1976, receiving the

degree of Master of Arts in Sociology in June 1978.

She has been employed in various research positions by the Puerto

Rico Department of Health, the Drug Addiction Control Administration,

Office of the Census at the Puerto Rico Planning Board. At present,

she is working as Director of the Planning Division at the Office of

Planning, Evaluation and Reports of the Puerto Rico Health Department.

She received a scholarship from the National Institute of Mental

Health in 1976 for her graduate studies and was trained as a

researcher in the Urban Studies Program and the Hispanic Research

Center at Fordham University. Her major is in Population and Urban

Studies.