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International Journal of Epidemiology 2000;29:168-174
© International Epidemiological Association 2000

Record-linkage between two anonymous databases for a capture-recapture estimation of underreporting of AIDS cases: France 1990–1993

Pascale Bernillona, Laurence Lievrea, Josiane Pillonelb, Anne Laporteb, Dominique Costagliolaa and The Clinical Epidemiology Groupfrom Centres d'Information et de Soins de l’Immunodéficience Humaine (CISIH),c

a B3E, INSERM SC4, Faculté de Médecine Saint-Antoine, France.
b Réseau National de Santé Publique, Saint-Maurice, France.
c The Clinical Epidemiology Group: Scientific Committee: S Alfandari, F Bastides, E Billaud, A Boibieux, F Boué, A Cabié, L Cotte, L Cuzin, F Dabis, J-P Daurès, V Garrait, J-A Gastaud, C Gaud, A Goudeau, C Katlama, D Lacoste, J-M Lang, H Laurichesse, P Leclercq, C Leport, M-E Mars, S Matheron, M-C Meyohas, C Michelet, J Moreau, C Pradier, D Quinsat, C Rabaud, W Rozenbaum,D Salmon-Ceron, M Sobesky, H Tissot-Dupont, R Verson, J-P Viard, A Waldner-Combernaoux. Data co-ordinating centre: INSERM SC4 (D Costagliola, M Mary-Krause, L Lièvre, J Deloumeaux). Centres d'Information et de Soinsde l’Immunodéficience Humaine (CISIH): Paris area: CISIH de Bichat-Claude Bernard (G-H Bichat-Claude Bernard: C Leport, S Matheron, A Villemant, E Bouvet), CISIH de Paris-Centre (Hôpital Broussais; Hôpital Cochin), CISIH de Paris-Ouest (Hôpital Necker adultes: J-P Viard; Hôpital Laennec: W Lowenstein; Hôpital Pasteur), CISIH de Paris-Sud (Hôpital Antoine Béclère: F Boué; CHU de Bicêtre: C Goujard; Hôpital Henri Mondor; Hôpital Paul Brousse), CISIH de Paris-Est (Hôpital Rothschild; Hôpital Saint-Antoine; Hôpital Tenon), CISIH de la Pitié-Salpétrière (G-H Pitié-Salpétrière: A Coutellier, T Similowski), CISIH de Saint-Louis (Hôpital Saint-Louis; Hôpital Lariboisière: J-M Salord), CISIH 92 (Hôpital Ambroise Paré; HôpitalLouis Mourier: C Chandemerle), CISIH 93 (Hôpital Avicenne: M Bentata,B Jarousse; Hôpital de Saint-Denis; Hôpital Jean Verdier). Outside Paris area: CISIH Auvergne-Loire (CHU de Clermont-Ferrand: H Laurichesse; Hôpital de Saint-Etienne), CISIH de Bourgogne-Franche Comté (Hôpital de Besançon: C Drobacmeff; CHU de Dijon: M-C Borne), CISIH de Caen (CHU de Caen: C Bazin), CISIH de Grenoble (CHU de Grenoble: P Leclercq), CISIH de Lyon (Hôpital de la Croix-Rousse; Hôpital Edouard Herriot; Hôtel-Dieu; Hôpital de Lyon-Sud), CISIH de Marseille (Hôpital Conception; Hôpital Houphouët-Boigny; Institut Paoli Calmettes: J-A Gastaut; Hôpital de Sainte-Marguerite: J-A Gastaut; Hôtel-Dieu; rattachés au CISIH (CHG d'Aix-En-Provence; Hôpital d'Arles; CH d'Avignon: G Brun; CH de Digne Les Bains:P Granet-Brunello; Hôpital de Gap; Hôpital de Martigues; Hôpital de Toulon)), CISIH de Montpellier (Hôpital de Montpellier; Hôpital de Nîmes), CISIH de Nancy (CHU de Nancy: C Rabaud), CISIH de Nantes (CHU de Nantes: S Perroy), CISIH de Rennes, CISIH de Rouen, CISIH de Strasbourg, CISIH de Toulouse (Hôpital Purpan: L Cuzin), CISIH de Tourcoing-Lille (CH de Tourcoing: M Valette), CISIH de Tours (CHU Bretonneau: J-F Besnier,M-F Maître), rattaché au CISIH de Nice: Hôpital Antibes. Overseas: CISIH de Guadeloupe (CHU de Pointe-à-Pitre: I Lamaury), CISIH de Guyane (CHG de Cayenne: M Sobesky), CISIH de Martinique (CHU de Fort-de-France:G Sobesky), CISIH de La Réunion (CHD de Saint-Denis: C Sautron).

Reprint requests to: L Lièvre, INSERM SC4, Faculté de Médecine Saint-Antoine, 27 rue Chaligny, 75571 Paris Cedex 12, France. E-mail: lievre{at}b3e.jussieu.fr

Objective To estimate the completeness of the French mandatory AIDS surveillance system (Déclaration Obligatoire DO) over the 1990–1993 period using a capture-recapture approach, by matching the mandatory reports with the AIDS cases present in the French Hospital Database on HIV infection (FHDH).

Methods An anonymous record-linkage algorithm was developed to identify those cases common to both anonymous surveillance systems. The linkage was based on sex, date of birth, and infection risk group, all strictly matched, and on the dates of AIDS diagnosis and of death, the places of diagnosis and residence, and the AIDS-defining diseases at diagnosis. The total number of AIDS cases and completeness of both surveillance systems were estimated using a capture-recapture approach, assuming independence of the ascertainment sources.

Results The completeness of the mandatory reporting was estimated at 83.6% (95% CI : 82.9–84.3), and that of the FHDH at 47.6% (95% CI : 46.9–48.3) for the surveillance of AIDS cases diagnosed among adults in France between 1990 and 1993. The completeness of the system based on FHDH increased over the study period as more hospitals joined the project, while the completeness of the DO surveillance system remained stable.

Conclusion This approach was useful in estimating the underreporting of AIDS cases in France. Regularly performed, it will allow the impact of underreporting to be monitored over time.

Keywords AIDS, surveillance, underreporting, record-linkage, capture-recapture, France

Accepted 6 July 1999


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