Validity of medico-administrative data related to amyotrophic lateral sclerosis in France: A population-based study

Abstract

The accuracy of French medico-administrative data concerning amyotrophic lateral sclerosis (ALS) is to date unknown. We aimed to assess the validity of hospital discharge data (HDD) and health insurance data (HID) related to ALS. A retrospective population-based study was performed. The French register of ALS in Limousin (FRALim) was used as gold standard (2000–2013 period). All patients discharged from the regional hospitals with a ‘G12.2’ code in their HDD (according to the International Classification of Disease-10th version) or having a G12 HID code were considered. In the study period, the register included a total of 322 incident ALS patients. Among 451 subjects identified through HDD, 290 were true incident ALS cases, corresponding to 90.1% (95% CI 86.3–93.1) sensitivity and 64.3% (95% CI 59.7–68.7) positive predictive value (PPV). A total of 184 subjects were identified through HID, 142 of which were true ALS cases. This corresponded to 44.1% (95% CI 38.6–49.7) sensitivity and 75.5% (95% CI 68.7–81.5) PPV. The combination of both HDD and HID led to 93.8% (95% CI 90.6–96.2) sensitivity and 60.8% (95% CI 56.3–65.1) PPV. This study shows that French HDD and HID, even if combined, are not per se suitable for accurate and exhaustive direct identification of ALS cases.

Key words:

• Amyotrophic lateral sclerosis
• epidemiology
• hospital morbidity data
• insurance data
• sensitivity
• positive predictive value
• administrative database research

Acknowledgements

The French national body coordinating ALS referral centres. ALS referral centres of Paris (Meininger, Salachas), Clermont-Ferrand (Clavelou and Guy), Toulouse (Cintas), Bordeaux (Lemasson). Health insurance; Régime Général Limousin (Gassimbala, Hourcade, Sofio, Farraud), Régime Social des Indépendants Limousin (Sale, Flahou), Mutualité Sociale Agricole Limousin (Dalle, Blet, Reilhac, Russel), Caisse Nationale Militaire de Sécurité Sociale (Barrandon, Desjeux, Thevennin-Garron, Marsan). Directors and those responsible for medical information systems in private and public hospitals in Limousin: CHU Limoges, Clinique du Colombier, Clinique des Emailleurs, Hôpital Intercommunal du Haut Limousin, Etablissement hospitalier St Junien Rochechouard, Centre hospitalier Jacques Boutard, Centre hospitalier de Tulle, Clinique de la croix blanche Moutier, Clinique de la Marche, Clinique des Cêdres, Clinique St Germain, Hôpital Monts et Barrages, Centre hospitalier Bernard Desplas, Centre Hospitalier Les Genêts d'Or, Centre médical de la Chênaie. Private neurologists in Limousin: Boukhris, Croguennec, Leman, Milor, Tabaraud, Lubeau, Chazot.