� 1 , Annotated cm Bibliography of Cause-of-Death ,= Validation Studies: PROPERW OF THE 1958-1980 PUBLICATIONS5f3Afqc~ U)}TOW L!BMRV An annotated bibliography of studies relating to the errors in diagnosing, recording, coding, and tabulating cause of death. Data Evaluation and Methods Research Sertes 2, No 89 DHHS Publication No, (PHS) 82-1363 U.S. Department of Health and Human Services Public Health Service Office of Health Research, Statistics, and Technology National Center for Health Statistics Hyattsvi[le, Md September, 1982 COPYRIGHT INFORMATION The National Center for Haalth Statistics has obtainad permission from the copyright holders to raproduce cartain quoted material in this report. Further reproduction of this material is prohibited without specific permission of the copyright holders. All othar material contained in the report is in the public domain and may be used and reprinted without special permission; citation as to source, howaver, is appreciated. SUGGESTED CITATION National Center for Health Statistics, A. Gittelsohn and P. Royston: Annotated bibliography of cause-of-death validation studies, 1958-80. Vita/ and Hea/th .Mdstics, Series 2, No. 89. DHHS Pub. No. (PHS) 82-1363. Public Health Setvica, Washington. U.S. Government Printing Office, Saptember, 1982. Library of Congrasa Cataloging in Publication Data Gittelsohn, Alan M. Annotated bibliography of cause-of death validation studies, 1958-1979. (Vital and health statistics, Serias 2, Data evaluation and methods rasaarch; no. 68) (DHHS publication; no (PHS) 81-1368) Authors: Alan Gittelsohn, Patricia N. Royston. 1. Death–Causes-Stat istics-Bibliography. 2. Death–Causas– Classification–bib biography. 3. Death–Proof and certification– Bibliography, 5. Errors, Theory of–bibliography. 1. Royston, Patricia N. Il. National Center for Health Statistics (U. S.) II 1. Series. IV Saries: DHHS publication; no. (PHS) 81-1368. [DN LM: 1. Death certificates-B ibliograph. 2. Mortality-United States–Bibliography. 3. Diagnostic errors–Bibliography. W2 A N148vk no. 68) RA409, U45 no. 89 [25725] 312.0723s 81-16855 (RA405.A11 ISB N 0-8406-0236-7 For sale by the Superintendent of Documents. U.S. Government Printing Office, Washington, D.(2. 20402 . National Center for Health Statistics ROBERT A. ISRAEL, Acting Director JACOB J. FELDMAN, Ph.D., Associate Director for Analysis and Epidemiology GAIL F. FISHER, Ph. D., Associate Director for the Cooperative Health Statistics System GARRIE J. LOSEE, Assockzte Director for Data Processing and Services ALVAN O. ZARATE, Ph. D., Assistant Director for International Statistics E. EARL BRYANT, Associate Director for Interview and Examination Statistics ROBERT L. QUAVE, Associate Director for Management MONROE G. SIRKEN, Ph.D., Associate Director for Research and Methodology PETER L. HURLEY, Assoczlzte Director for Vital and Health Care Statistics ALICE HAYWOOD, Information Officer Officeof Researchand Methodology MONROE G. SIRKEN, Ph.D., Associate Director JAMES T. MASSEY, Ph.D., ChiefiSuruey Design Staff ROBERTJ. CASADY,Ph.D., (%ie$StatisticalMethodsStaff KENNETH W. HARRIS, Special Assistant for Program Coordination and Statistical Standards Foreword I Compilation of national cause-ofdeath statistics The most striking finding is that so little is known is a basic program responsibility of the National about the quality of medical certification and its Center for Health Statistics. Consequently, the Center effect on diagnostic statistics in general and on is very interested in the quality of the medical certifi­ national cause-ofdeath statistics in particular. cations reported on death certificates since it is of Apparently no country has a welldefmed fundamental importance in interpreting cause-of- program for systematically assessing the quality of death statistics. The more that is known about the medical certifications being reported on death certifi­ quality of the medical certifications, the better the cates or for measuring the error effects on the levels Center and its data consumers will be able to use and trends of cause-of-death statistics. There are, for national cause-of-death statistics, example, only three references in this bibliography to This bibliography presents an annotated listing of U.S. studies that were national in scope. These studies published and unpublished papers on the quality of were based on deaths due to lung cancer [44], cardio­ cause-of-death statistics. The compilation is based on vascular. diseases [83 ], and chronic respiratory a search of the relevant literature, as well as a survey diseases [73], that occurred during 1958, 1960, and of producers and users of mortality statistics. It 1963, respectively. Expanding these national studies contains 128 references to a wide assortment of to include other diagnoses and updating them period­ studies that were conducted in this country and ically would be tremendously useful in interpreting abroad during the preceding 24 years. Since the differentials and trends in national cause-ofdeath deaths covered by the referenced studies vary statistics. considerably by cause, place, and year of death, as The studies that are referenced in this bibliogra­ well as by the methods used to evaluate the certifi­ phy used a variety of methods to evaluate the quality cations, this publication contains several indexes to of medical certifications on death records. The three assist the readers in locating appropriate references. national studies noted above, for example, were based These indexes are described in the Introduction. on death record follow-back surveys of the medical The bibliography was compiled intially to assist providers who had certified the causes of death or the Center in assessing the state of knowledge with had formerly treated the decedents. It may be of respect to the quality of medical certification, and interest to summarize the principal design features of the state of the art with respect to methods that have these follow-back surveys: been used to evaluate the quality of cause-ofdeath statistics. It is being published to provide health researchers with a comprehensive reference guide to . The scope of a survey is limited to particular the literature on this subject. cause(s) of death. Definitive conclusions about the quality of . Disease algorithms are developed that specify the medical certification on the death certificates have criteria for evaluating the certitude of diagnosis not been reached based on the studies listed in this for the causes reported on the death certificate. bibliography. Evidently the quality varies greatly by cause of death and characteristics of the decedent. Survey questionnaires are designed to collect the However, the findings provide no basis for compla­ information required by the disease algorithms. cency. Some studies detected large discrepancies . Samples of deaths certified to particular causes of between the diagnoses certified on death certificates death are selected from the Current Mortality and those reported by autopsy and hospital records. Sample, which is a 10 percent national sample of ... Ill death records that is processed on an accelerated gation. Both types of follow-back surveys are essen­ schedule. tial in the evaluation of the quality of medical certi­ fications. � Surveys are conducted with the medical certifiers Many persons contributed to the preparation of and other medical providers that treated the this bibliography. The literature search and initial sample decedents. drafts of the annotations were performed primarily � Clinicians with specialties in the particular dis­ by Bruce Thompson, a graduate student at Johns eases work closely with the support staff that Hopkins University, working under the direction of assesses the medical information reported in the Dr. Alan Gittelsohn. Dr. Helen Abbey, Johns Hopkins survey. University, also contributed to this work. Dr. Iwao M. Moriyama and Ms. Lillian Guralnick served as peer The studies referred to above have demonstrated reviewers of this report, and they provided additional that these procedures are well suited to evaluate the references as well as helpful suggestions. All of these causes of death that are reported on the death certifi­ contributions are gratefully acknowledged. cate. The methodology would have to be expsnded, however, to detect the causes which should have been, but were not reported on the death certificates. Estimating the false negatives requires a complimen­ tary type of follow-back survey that is based on a representative sample of death records that did not Monroe G. Sirken certify the particular causes of death under investi­ � iv Forward . ..s..- ....”.s.””..-.00..o-=0”-=o “..””- ‘ii Introduction . ...””.. ......””s””.”00..”o””.”--. ““s.=” 1 Classification system . S..om..--.....SSS..””.S”” .o.”.”-. 2 Bibliography . .. s. .. ”. .- .. ss. ”.” s”.””.””” ..” 4 Index . ...!..... .. 0” . ..”. ..”s” “00 .ss. .” ”QSO”. ””. ”” S. S”O”I. 41 v Annotated Bibliographyof Cause-of-Death Validation Studies Alan Gittelsohn, Ph. D., Johns Hopkins University, and Patricia N. Royston, National Center for Health Statistics tern. This search located articles published be- Introduction tween 1966 and 1977 whose titles and abstracts included specified words. The following phrases and keywords were used: cause with death, death This bibliography contains annotations for 128 with certificate, death certificate, death adjacent articles pertaining to the quality of cause-of-death statistic, correlation, precision, accuracy, accurate,