Mandatory Notification (MN) of Mesotheliomas

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1 Maladies chroniques et traumatismes September 2014 Occupational health Mandatory Notification (MN) of Mesotheliomas 2012, First Year of the Program s Nationwide Operation Laurence Chérié-Challine, Nathalie Bonnet, Ellen Imbernon, with the participation of Céline Gallot Department of Occupational Health (DST), French Institute for Public Health Surveillance (InVS), Saint-Maurice, France. Mandatory Notification (MN) of Mesotheliomas 2012, First Year of the Program's Nationwide Operation After Laurence a pilot Mandatory phase Chérié-Challine, in 2011 Notification in 6 volunteer Nathalie (MN) Bonnet, regions, of Mesotheliomas mesothelioma Ellen Imbernon Department to implement of Occupational the Meso-MN Health, surveys French to improve Institute knowledge for Public became Health 2012, the Surveillance 31st First mandatory Year of the notification Program's disease Nationwide in France, Operation about occupational and environmental exposure in 3 by decree (n , January 16, 2012). This mandatory populations that experts know too little about: individuals notification with the Laurence requirement participation Chérié-Challine, applies of Céline to Nathalie all Gallot, doctors Bonnet, Department (pathologists Ellen Imbernon of Occupational and Department with Health, non-pleural of Occupational French mesothelioma, Institute Health, for French Public men Institute Health younger for Surveillance than Public 50, and clinicians) After Health a practicing pilot Surveillance phase in in metropolitan 2011 in 6 volunteer or overseas regions, France mesothelioma who women became with the pleural 31 st mandatory mesothelioma. notification disease in France, diagnose by decree a case (n , of mesothelioma, January 16, regardless 2012). This of its mandatory anatomic notification requirement applies to all doctors (pathologists and with the participation of Céline Gallot, Department of Occupational Health, French Institute for Public Health Surveillance site. clinicians) It is part of practicing the second in national metropolitan Cancer or Plan overseas and contributes France who diagnose This knowledge a case should of mesothelioma, help us to guide regardless community of its prevention anatomic After a pilot phase in 2011 in 6 volunteer regions, mesothelioma became the 31 st mandatory notification disease in France, more site. widely It by is decree part to measures of (n , the second against January national asbestos-related 16, 2012). Cancer This Plan cancers, mandatory and contributes an notification activities more requirement and widely increase to applies important medical to all steps doctors and social against (pathologists recognition asbestos-related and for the important cancers, clinicians) public an important health practicing problem. public in metropolitan health problem. or overseas France who diagnose benefit a of case individual of mesothelioma, patients. regardless The PNSM, of its in operation anatomic since site. It is part of the second national Cancer Plan and contributes 1998, more is widely the reference to important system steps for against monitoring asbestos-related and knowledge Established Established cancers, by the by an French the important French Institute public Institute for health Public for problem. Health Public Surveillance Health Surveillance of pleural (InVS) mesothelioma; at Ministry nonetheless of Health s it request cannot and describe applying the (InVS) recommendations the Ministry of of the Health s High Council request of and Public applying Health (HCSP), pleural mesothelioma mandatory notification situation of in mesothelioma districts it does has two not recommendations objectives Established intended of by the the to High further French Council Institute epidemiological of Public for Public Health knowledge: Health (HCSP), Surveillance cover. (InVS) Mandatory at the Ministry notification of Health s completes request and the applying PNSM for the recommendations of High Council of Public Health (HCSP), mandatory notification of mesothelioma has two mandatory - To use notifications of from mesothelioma doctors to strengthen has two objectives the monitoring other of all mesotheliomas, sites, to especially complete peritoneum. national program It is not of objectives intended to further epidemiological knowledge: intended mesothelioma to further surveillance epidemiological (PNSM), knowledge: which covers only cases of an pleural expert-based mesothelioma system and and only cannot in 21 districts. replace the system for - To use notifications from doctors to strengthen the monitoring of all mesotheliomas, to complete the national program of - To implement the Meso-MN surveys to improve knowledge mesothelioma surveillance (PNSM), which covers only cases of pleural reporting about mesothelioma occupational and only diseases. and environmental exposure in 3 in 21 districts. to populations use notifications - To implement that from experts the doctors Meso-MN know to strengthen too surveys little about: the to monitoring improve individuals knowledge with about non-pleural occupational mesothelioma, and environmental men younger exposure than in 3 50, and of women all mesotheliomas, populations with pleural that mesothelioma. to experts complete know the too national little about: program individuals of with non-pleural mesothelioma, men younger than 50, and mesothelioma women with surveillance pleural mesothelioma. (PNSM), which covers only cases of This pleural knowledge mesothelioma should and help only us to in 21 guide districts. community prevention activities, and increase medical and social recognition for the benefit This knowledge of individual should help patients. us to guide The PNSM, community in operation prevention activities, since 1998, and increase is the reference medical and system social recognition for monitoring for and knowledge the benefit of pleural of individual mesothelioma; patients. nonetheless The PNSM, in it operation cannot describe since 1998, the pleural is the reference mesothelioma system situation for monitoring in the and districts it does knowledge not cover. of Mandatory pleural mesothelioma; notification nonetheless completes the it cannot PNSM describe for the other pleural mesothelioma sites, situation especially in the the districts peritoneum. It does not cover. Mandatory notification completes the PNSM for the other mesothelioma sites, especially the peritoneum. It I is Figure not an is not 1 expert-based I system and cannot replace the system for reporting occupational diseases. an expert-based system and cannot replace the system for reporting occupational diseases. The The two two The components two components components of the of of the national the national national mesothelioma mesothelioma mesothelioma MN system MN MN system system The first component: national epidemiological surveillance (notification) The first component: national epidemiological surveillance (notification) French Institute for Public Health Surveillance / p. 1 1

2 The first component: national epidemiological surveillance (notification) Strong involvement of all MN participants The project is coordinated by the InVS and was developed with support from the relevant institutions (Directorate-General of Health DGS, Directorate-General of Labor DGT, and National Cancer Institute INCa). Representatives of these institutions and of various organizations and professional groups (French Society of Pathology (SFP), French-language Society of Pulmonary Medicine (SPLF), National Council of Oncology (CNC), and the National Network for rare peritoneal tumors (RENAPE), the National Reference Centre for pleural mesothelioma (Mesoclin), and Expert Pathologists Network for Mesothelioma (Mesopath)) sit on the project steering committee (COPIL). Their participation enables the communication, cooperation, and guidance necessary for the development and effective operation of the program. The MN system is organized on a regional basis, with the interregional epidemiology groups (Cellules interrégionales d épidémiologie) (CIRE-InVS), the regional health agencies (Agences régionale de santé) (ARS), regional oncology networks (RRC), and in association with the PNSM team in the regions concerned. The InVS, with its national and regional partners, is conducting numerous communication activities aimed at increasing awareness and ination among all doctors who may potentially see cases that must be notified. The regional oncology network plays an essential role in local communication, through its regional networks of potential notifiers, and seeks the active participation of all doctors who diagnose mesothelioma. Awareness among gastroenterologists is also facilitated by the national network of rare peritoneal tumors (RENAPE). Satisfactory results for 2012, the first year of notification The early results concern 618 new cases of mesothelioma diagnosed histologically in 2012 and reported through the MN program from January 2012 (when it began) to April 30, The end date is consistent with the mean notification delay of 4 months, observed during the first 6 months of notification in We note that the data presented probably do not reflect the real situation, especially in view of the non-exhaustive participation of all doctors who might diagnose mesothelioma and the permanent and developing nature of the MN system. Thus, between May 2013 and February 15, 2014, the InVS received 41 new reports of mesothelioma cases diagnosed in 2012, for a total of 659 incident cases that year, still below the number expected. I Table 1 I Summary of the characteristics of the cases diagnosed in 2012 and notified between January 2012 and April 30, 2013 Characteristics of notifications Number of cases of mesothelioma: 618 (615 in metropolitan France, 3 in Reunion, 0 in Martinique- Guadeloupe-Guyane) Notifying physicians 781 notification s, transmitted by: - pathologists: 74% - clinicians: 52% Cases notified by a pathologist and a clinician (=notification rule): 22% Mean time until transmission by metropolitan region From date of diagnosis to reception by InVS All notifications: 94 days Notifications from January to June 2012: 124 days (range: 41 to 226 days) Notifications from July to December: 63 days (13 to 116 days) Anatomic site Characteristics of mesothelioma Pleura: 89% (Men: 92% - Women: 83%) Peritoneum: 9% (Men: 7% - Women: 14%) Tunica vaginalis (testes): 2 cases Sex All sites: Men: 73% - Women: 27% Pleura: Men: 75% - Women: 25% Peritoneum: Men 58% - Women: 42% Mean age All sites: Men: 72.6 years - Women: 71.0 years Pleura: 73.4 years - Women: 72.8 years Peritoneum: Men 67.9 years - Women: 64.2 years Younger than 50 years All sites: 2.6% (Men: 1.3% - Women: 6.1%) Pleura: 1.3% (Men: 0.5% - Women: 3.8%) Peritoneum: 16.6% (Men 12.9% - Women 21.7%) p. 2 / French Institute for Public Health Surveillance Mandatory Notification (MN) of Mesotheliomas. 2012, First Year of the Program s Nationwide Operation

3 The ination about known occupational contact with asbestos was reported often When clinicians report the diagnosis directly to the regional health agency, their opinion about occupational contact with asbestos is stated directly on the ; when a pathologist notifies a case, the regional health agency contacts the clinician by telephone to obtain this ination. This variable was reported in 78% of cases. Certain or possible contact is specified in 47%, and absence of known contact in 19%. In 12% of the cases, the clinician could not answer. The level of coverage nationwide on April 30, 2013, ranges from 51% to 77% If we base our assessment on the order of magnitude of the annual number of expected cases of mesothelioma (all sites), from 800 to 1200 (source: INCa), we can consider that nationally, on April 30, 2013, the MN system had recorded 51% to 77% of the cases diagnosed in On February 15, 2014, given the 41 new cases from 2012 notified late, the level of national exhaustiveness had improved by 5%, that is, to 56% to 82%. Substantial differences in the exhaustiveness between regions There were substantial differences in the level of completeness between regions. On April 30, 2013, one third of the regions had come close to complete reporting, with the number of cases from MN of the same order of magnitude as those estimated by the PNSM and mortality similar to that reported by the PMSI and/or Cépi-Dc-INSERM. These regions include Aquitaine, Bourgogne, Limousin, the Midi-Pyrénées, the Nord- Pas-de-Calais, Picardie, and Poitou-Charentes. Inversely, the completeness of reporting remains low in some regions. We note nonetheless that the situation has since changed as a function of the notifications received for each region. The 2012 data from both the PMSI and the causes of death were not available at the time this document was written, so that comparisons were possible only for earlier years (2011 for PMSI and 2010 for mortality). I Table 2 I Comparison between regions for incident cases reported by MN and other surveillance systems DO Incident cases 2012 Range of expected number of incident cases (1) PMSI Cases 2011 (linked since 2004) Mortality Death 2010 Lower-upper range Pathologist national reference center (2) Cases assessed 2012 Alsace Aquitaine Auvergne Basse-Normandie Bourgogne Bretagne Centre Champagne-Ardenne Corse Franche-Comté Haute-Normandie Ile-de-France Languedoc-Roussillon Limousin Lorraine Midi-Pyrénées Nord-Pas-de-Calais Paca Pays de la Loire Picardie Poitou-Charentes Rhône-Alpes Total metropolitan France ,200 1, , (1) National numbers (source INCa), regional order of magnitude based on size of the regional population, without taking the differences in exposure by region into account, although they can be substantial. (2) Regional distribution of cases analyzed by experts, according to the location of the diagnosing pathologist s practice (and not the patient s home), for both primary cancers and recurrences (source Mesopath). French Institute for Public Health Surveillance / p. 3

4 Exhaustiveness must improve further to allow epidemiological surveillance These early results show that the quality of the mesothelioma MN system varies according to region. They should help to guide actions to increase the participation of both pathologists and clinicians. The modalities of its implementation must be debated within COPIL especially for national activities but also for adaptation to the situation in each region, to be discussed with each of the regional project teams. The second component, for knowledge of the exposure factors (Meso-MN surveys) In accordance with the opinion of the High Council of Public Health (HCSP) dated October 21, 2010, the InVS is setting up exposure surveys to strengthen our knowledge of the occupational and environmental factors (asbestos and other fibers) in 3 populations insufficiently known (30% of all mesotheliomas): people with non-pleural mesothelioma; women with pleural mesothelioma; men younger than 50 years with pleural mesothelioma. These Meso-MN surveys are conducted by the Department of Occupational Health (DST-InVS) with the Department of Environmental Health (DSE-InVS), the regional and alert coordination department (DCar-InVS), and the PNSM experts. They are intended to complete the exposure surveys conducted as part of PNSM. Pilot phase conducted in 2014 in 9 regions The Meso-MN surveys are being tested in 2014, for a one-year period, in 8 volunteer regions in metropolitan France (Aquitaine, Alsace, Basse-Normandie, Bretagne, Franche-Comté, Limousin, Picardie, and Poitou-Charentes) and in one overseas region (Reunion). The CNIL approved the study on May 8, 2013 (decision DR ). The patients to be surveyed are identified from the MN s received by the participating regional health agencies. Patients eligible for both the PNSM and Meso-MN surveys (men < 50 years or woman with pleural mesothelioma and living in a PNSM district) are surveyed according to the PNSM procedure. Two regional models are being tested: surveys conducted by the InVS interregional epidemiology teams (CIRE in Bretagne, Limousin, Picardie, Poitou- Charentes, and Reunion); surveys conducted by the local PNSM team, as part of an extension of the PNSM, applying the Meso-MN survey procedure (Alsace, Aquitaine, Basse-Normandie and Franche- Comté). The InVS is collaborating with the occupational health team (ESSAT) of the environmental and occupational health laboratory (Laboratoire-Santé-Travail-Environnement (LSTE)) at the University of Bordeaux: they provide an expert assessment of the exposure of case patients, based on their analysis of the survey answers. A progressive national rollout of these surveys should begin in 2015, depending on the results of the pilot phase The pilot phase will allow us to test all phases of the Meso- MN survey and to assess the time and staff necessary for the perance of each stage. It will allow us to analyze the participation rate in these surveys and the quality of questionnaire completion. It will also allow us to assess the feasibility of these surveys and their relevance for meeting our objective to strengthen knowledge of exposure to asbestos and other fibers. If the outcome is positive, recommendations will be produced for the rollout of these surveys in the other regions, both metropolitan and overseas; it will take place progressively, starting in 2015 in accordance with the local situation in each region and the budget available. In conclusion Through the support of the professional groups and societies and institutions, especially members of the COPIL, and in association with its regional partners, the InVS has been able to establish an effective national surveillance system for mesothelioma, based on a MN system. This system can and must be improved further. It is also essential to continue all together its development. Support for the national epidemiological surveillance program for mesothelioma and the development of exposure surveys are among the points included in action 12-4 ("support epidemiological surveillance and research to improve knowledge of occupational cancers") of the Cancer Plan for , launched by the president of the republic on February 4, This national program includes MN of mesothelioma and the PNSM, two linked systems complementary in terms of their objectives. InVS continues to produce regular reports updating the current epidemiological situation of mesotheliomas in France. The next MN report will cover in particular the consolidated incidence data for 2012 and the incidence data for French Institute for Public Health Surveillance / p. 4

5 Review of the notification procedure for a new case of mesothelioma Definition of a case to be notified The following cases must be notified: all new cases of mesothelioma of the pleura, the peritoneum, the pericardium, the testes vaginalis, or of any other or unspecified site, diagnosed from a pathology examination or a clinical expert assessment in the absence of a histologic examination or confirmation, based on clinical, radiologic, and ultrasound findings. Two notification s: pathologists and clinicians Can be downloaded from the InVS website (http://www. The notifying physician must use the appropriate to his or her specialty (pathologist or clinician) and region of practice (access by pulldown menu - upper right line). Notification procedure The diagnosis is reported after it has been histologically confirmed. It comprises two stages: 1) completion of the (pathologist or clinician ) for the doctor s region of practice; 2) rapid transmission, even if incomplete, dated and signed, by fax to the doctor responsible for mandatory notifications of mesothelioma at the regional health agency of the region of practice (fax number in the regional pulldown menu). The cases to be surveyed All people with non-pleural mesothelioma. Women with pleural mesothelioma. Men younger than 50 years with pleural mesothelioma. I Figure 2 I Notification circuit of a new case of mesothelioma Notifying physicians Notifying pathologists - complete the pathologists with the ination they have available Notifying clinicians - complete the clinicians - in the patient about mandatory notification Pathologists Clinicians Physicians, Regional Health Agency (ARS) - validate the s - contact notifying physician, if necessary - establish anonymous code - send the completed and anonymized - store the identity-code data for 12 months Pathologists anonymized Clinicians anonymized Epidémiologists/InVS - validate the s - match the clinicians and pathologists s - eliminate duplicates - data entry into the national database: quality control national analyses feedback to regions French Institute for Public Health Surveillance / p. 5

6 To learn more 1. L. Chérié-Challine, N. Bonnet, E. Imbernon. Déclaration obligatoire des mésothéliomes : 2012, première année de fonctionnement du dispositif national, rapport InVS Bulletin de rétro-ination n 1 du réseau DO mésothéliomes. 3. Dossier DO sur le site de l InVS : 4. Des indicateurs en santé travail Risques professionnels dus à l amiante. Saint Maurice : Institut de veille sanitaire ; p. Available from the URL: Acknowledgments We thank : - the notifying physicians; - the regional partners (ARS-CVAGS, Cire, RRC, local PNSM team); - the professional societies (SFP, FFP, SPLF, CNC, CPHG, Renape, CNPath, Mesoclin, Mesopath); - the members of the Project steering committee (PJ. Bousquet, A. Buémi, L. Chérié-Challine, F. Capron, PL. Druais, M. Fontaine, F. Galateau-Sallé, A. Gallay, S. Gilardin, A. Gilg Soit Ilg, FN. Gilly, JP. Grignet, E. Imbernon, J. Le Moal, P. Lonchambon, F. Martin, F. May-Levin, C. Merle, T. Molina, JC. Pairon, JC. Sabourin, A. Scherpereel, A. Thuret, V. Trillet-Lenoir, S. Urban, L. Villeneuve). Key words: Mandatory notification, mesotheliomas, epidemiological surveillance, exposure surveys, France Suggested citation: Chérié-Challine L, Bonnet N, Imbernon E. Mandatory Notification (MN) of Mesotheliomas. 2012, First Year of the Program s Nationwide Operation. Saint-Maurice (Fra): French Institute for Public Health Surveillance (Institut de veille sanitaire); p. Available from the URL: French Institute for Public Health Surveillance (Institut de veille sanitaire), 12 rue du Val d Osne Saint-Maurice Cedex France Tel.: 33 (0) Fax: 33 (0) ISSN: ISBN-NET: Design/Production: Communication department InVS Legal deposit: september 2014