III. KNOWLEDGE BASE ON THE 65 CAUSES OF DEATH (EUROSTAT SHORT LIST)

III. KNOWLEDGE BASE ON THE 65 CAUSES OF DEATH (EUROSTAT SHORT LIST) This section of the report on the 'Knowledge base on the 65 causes of death' comprises two parts: a published studies database and an analysis on specific causes of death. The published studies database is the result of an international literature review of studies published on the quality and comparability of causes of death statistics since the eighties. The analysis on specific causes of death consists of an overview of four groups of pathologies; suicide and events of undetermined intent, cardiovascular diseases, pulmonary diseases (including larynx/trachea/bronchus/lung cancers), and malignant neoplasm of breast. III.1 PUBLISHED STUDIES DATABASE To improve the quality and comparability of European causes of death statistics, the first priority was to make an inventory of the international knowledge available on this item. This had not previously been achieved apart from a literature review undertaken by the National Center for Health Statistics NCHS (USA) in which papers had been selected and annotated (Annotated Bibliography of cause-of-death validation studies: 1958-1980). This particular literature review gave us an important amount information but the articles analysed were not recent. With a total of 943 articles ranged according to the Eurostat short list of 65 causes of death (+ general studies not focused on a specific pathology), the database is an important production of the project. It provides a large source of information for the European Commission and researchers. It must also be considered as a basic material for future projects and analysis. III.1.1 METHODOLOGY The methodology has been divided in three main steps: - the interrogation of the bibliographic databases - the selection of the articles - the organisation of the database. Interrogation of the bibliographic databases Two bibliographic databases have been considered: Medline and Embase. Medline has been interrogated on line from year 1985 to year 1990. Embase has been interrogated using a CD- ROM from years 1988 to 1998 (an additional French bibliographic database 'Pascal' was also interrogated at the end of the process). The procedure of interrogation followed successive steps using the existence of specific key words in the project title, the summaries, and the bibliographic databases own descriptors. The initial step was to accept papers for which the titles incorporated the words 'mortality' or 'death(s)'. These were linked with one (or more) of the following words: 'classification', 'coding' ('codification', 'codifying', 'codified'), 'certificate's ('certification', 'certifying'), 'notification', 'registration', 'reporting', 'underreporting', 'underlying', 'recording', 'bias(es)', 'accuracy', 'reliability', 'comparability'. The second step was to accept the papers for which the word 'mortality' or 'death(s)' was present in the title and linked with one of the aforementioned words in the summary. After these two steps the interrogation used the Medline and Embase descriptors. The articles accepted were classified by the following descriptors: 'death', 'cause of death', 'death certificates', 'mortality'. The article was chosen when one of the above words featured in either the title or summary. These interrogations at this step permitted us to select nearly 2000 papers that then needed to be overviewed and submitted to a process of re-selection. p99

Overview and final selection of the studies For each article, the summary was printed and reviewed by the project leader. The following process of elimination rejected more than one paper out of two because they were not strictly adapted to the aim of the project. Some other reasons led to the exclusion of certain papers, even if they were focused on the quality or comparability of mortality statistics ; the nature of the editor, the country of the study or the language. The only articles accepted (with a few exceptions) were: papers published in scientific revues which had been subjected to a 'Reading committee' who controlled the scientific value of the study; studies undertaken in developed countries (the problems in developing countries are not at the same level, e.g. the absence of Civil Registry etc.); papers published in English and French. Other articles have added to the ones selected by this process. These were articles from a previous study undertaken by the project leader and others ordered by the researchers while analysing the specific causes of death. Organisation of the data base After this final overview, the task was to put the papers in order. As an important research Centre, CépiDc INSERM receives the most important international revues concerning public health. This made it possible to make direct copies of half of the papers selected. The other half was ordered by the specialised French Institute (INIST Institute de l information scientifique et technique; http://www.inist.fr). The articles were then arranged according to the Eurostat short list of 65 causes of death. This grouping consisted of the identification of the diseases investigated, and the possible link between one or more papers. Each study was grouped with the scientist's reactions if any existed (comments, letters...). The database was presented in three ways; files, tables and a bibliography. The files are the material classification of the articles. For each pathology there is a file where the studies are stored with two copies of the article and the bibliography data base notes and summary when available. The tables (presented in the following section) consist of an index arranged by cause of death under which the main information concerning that study can be found ; a bibliographic data base number, and a pathology number, title, author, revue, year of publication, country (where the study has been done), language, relation (comment, letter...). An identification number given by the co-ordination team enables us to easily locate any article when needed. The bibliography follows the classic way of presentation for scientific international revues. As for the files and the tables, the scientific bibliography is listed by pathology. Example of the bibliography (edited in total in Annexes) INFECTIOUS AND PARASITIC DISEASES Eurostat shortlist n 01 Gideon NM, Mannino DM. Sarcoidosis mortality in the United States, 1979-1991:an analysis of multiplecause mortality data. The American Journal of Medicine 1996;100(4):423-27. MacDorman MF, Hoyert DL, Rosenberg HM. Cause-of-death categories. (comment on:read JS;1997). American Journal of Public Health 1997;87(12):2054-55. Perkins BA, Flood JM, Danila R, et al. Unexplained deaths due to possibly infectious causes in the United States:defining the problem and designing surveillance and laboratory approaches. Emerging Infectious diseases 1996;2(1):47-53. Read JS, Troendle JF, Klebanoff MA. Infectious disease mortality among infants in the United States, 1983 through 1987. (see comment:macdorman;1997). American Journal of Public Health 1997;87(2):192-98. White MC. Mortality associated with nosocomial infections:analysis of multiple cause-of-death data. J Clin Epidemiol 1993; 46(1):95-100. p100

The tables and the bibliography are available for the studies on specific pathologies. The general studies not attributed to a specific cause of death are stored on file but not listed in detail. III.1.2 CONTENTS OF THE DATA BASE In this section are analysed and listed the 532 papers attributed to specific causes of death. First a brief analysis describes the distribution of the articles by country and pathology. Then the papers are presented in tables arranged by cause of death according to the Eurostat short list. III.1.2.1 GENERAL FEATURES The over representation of English speaking countries Out of the 532 papers attributed to specific causes of death, 221 concern European countries, 274 concern other developped countries and 37 are international studies. The representation of European countries is altered because of language differences (only articles in English and French have been kept). The UK published 122 papers but naturally it is over-represented because a major part of scientific revues only accept studies written in English. As the co-ordination team also accepted articles in French, France is overrepresented with 25 papers. In contrast, countries speaking languages other than English or French are under-represented (i.e. Germany had 40 articles published in German, and Spain 26 articles published in Spanish). Apart from the UK, two countries have published more than ten articles in English: Sweden and Italy (14 papers). Within the 274 articles concerning countries outside Europe, most are from the USA (225) and ranking second is Australia with 23 papers. International studies are rare. We found 37, and 13 of these concerned European countries. Table 1 Studies by country European Union and EFTA Member States 221 UK 122 France * 25 Sweden 14 Italy 14 Ireland 9 Belgium 8 Finland 7 Denmark 7 Netherlands 4 Germany* 4 Other MS 7 Other countries 274 USA 225 Australia 23 New-Zealand 10 Canada 8 Japan 6 Other 2 International Studies 37 Nordic countries 3 European countries 13 Other international 22 General total 532 * Only articles in English and French have been kept. This explains why there is a higher representation of English and French speaking countries. Opposingly, countries speaking languages other than English or French are under represented 'Conditions originating in the perinatal period', neoplasms and suicide: the three causes of death the most studied p101

According to the Eurostat short list of 65 causes of death, the pathologies in which most studies concentrate on the quality and comparability of statistics are: 'certain conditions originating in the perinatal period', neoplasms and suicide. These three causes of death total 187 papers out of the 532 affected to specific pathologies. A second group of 6 causes of death totals between 20 and 30 articles each; asthma, AIDS, ischaemic heart diseases, alcohol abuse, diseases of the circulatory system and accidents. A third group is constituted of 8 other causes of death (between 10 and 20 articles) : complications of pregnancy-childbirth, external causes of injury and poisoning, diabetes, cerebrovascular diseases, mental disorders, sudden infant death, diseases of the nervous system and drug dependence. 26 causes of death have less than 10 papers, and for 22 we did not find any specific study published. Table 2. Studies by Cause of Death (Eurostat Short List) Nr Disease or External Cause Number of Articles 01 Infectious and parasitic diseases 5 02 Tuberculosis 5 03 Meningococcal infection / 04 AIDS (HIV-disease) 27 05 Viral Heptitis / 06 Neoplasms 58 07 Malignant neoplasms / 08 of which Malignant neoplasm of lip, oral cavity, pharynx / 09 of which Malignant neoplasm of oesophagus / 10 of which Malignant neoplasm of stomach / 11 of which Malignant neoplasm of colon 3 (1) 12 of which Malignant neoplasm of rectum and anus 1 13 of which Malignant neoplasm liver and the intrahepatic bile ducts 1 14 of which Malignant neoplasm of pancreas / 15 of which Malignant neoplasm of larynx and trachea/bronchus/lung 7 16 of which Malignant melanoma of skin 1 17 of which Malignant neoplasm of breast 6 18 of which Malignant neoplasm of cervix uterus 1 ) 19 of which Malignant neoplasm of other parts of uterus 1 )same article 20 of which Malignant neoplasm of ovary 1 ) 21 of which Malignant neoplasm of prostate / 22 of which Malignant neoplasm of kidney / 23 of which Malignant neoplasm of bladder 4 24 of which Malignant neoplasm of lymph./haematopoietic tissue 2 25 Diseases of the blood (-forming organs), immunol.disorders / 26 Endocrine, nutritional and metabolic diseases 1 27 Diabetes mellitus 17 28 Mental and behavioural disorders 13 29 Alcohol abuse (including alcoholic psychosis) 25 30 Drug dependence, toxicomania 11 31 Diseases of the nervous system and the sense organs 12 32 Meningitis (other than 03) / 33 Diseases of the circulatory system 21 34 Ischaemic heart diseases 27 35 Other heart diseases / 36 Cerebrovascular diseases 16 37 Diseases of the respiratory system 9 38 Influenza / 39 Pneumonia 1 40 Chronic lower respiratory diseases / 41 of which asthma 28 42 Diseases of the digestive system 2 43 Ulcer of stomach, duodenum and jejunum / 44 Chronic liver disease 2 45 Diseases of the skin and subcutaneous tissue / 46 Diseases of the musculoskeletal system/connective tissue / 47 Rheumatoid arthritis and osteoarthrosis 6 48 Diseases of the genitourinary system 2 49 Diseases of kidney and ureter / 50 Complications of pregnancy, childbirth and puerperium 19 51 Certain conditions originating in the perinatal period 76 52 Congenital malformations and chromosomal abnormalities 1 p102

53 Congenital malformations of the nervous sytem / 54 Congenital malformations of the circulatory system / 55 Symptoms, signs, abnormal findings, ill-defined causes 5 56 Sudden infant death syndrome 13 57 Unknown and unspecified causes 1 58 External causes of injury and poisoning 19 59 Accidents 20 60 of which Transport accidents 4 61 of which Accidental falls 1 62 of which Accidental poisoning / 63 Suicide and intentional self-harm 53 64 Homicide, assault 4 65 Events of undetermined intent / 66 All causes 411 TOTAL 943 III.1.2.2 TABLES OF THE ARTICLES ACCORDING TO THE 65 CAUSES OF DEATH (EUROSTAT SHORT LIST) This section presents the tables listing the 532 articles on the quality and comparability of mortality statistics attributed to specific causes of death (excluding the general articles on the item). They are arranged from cause of death 1 to cause of death 65 (Eurostat short list). When there is no article according to the pathology, the name and number of the cause of death is indicated with the mention: 'no article'. Key grid permitting to understand the following tables This keygrid permits to understand the information collected for each paper. N INSERM reference *; when there are two numbers with : a/ Base Nr Number of Embase or Medline / if no number : other sources Base Base 1 : Medline 2 : Embase if no number : other sources Path. Title Number of the cause of death in the Eurostat shortlist Title of the article Journal Journal in which the article appeared ** Year Author Country Year in which the article appeared First author of the article Country to which the study refers Lg Language 1 : English 2: French Pages Relation Page numbers concerned CM : xxxx comment pertaining to this article with its INSERM reference number CM on xxxx = this is a comment on the article with its INSERM reference number * Numbers 1 to 999 : articles selected from the two data bases 1000 to 1999 : articles found from another study 2000 to 2999 : comments or letters ordered later / articles from other sources 3000 : additional articles asked for by authors ** (abbreviations) p103