title: 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.
authors: a INSERM, U1094, Neuroépidémiologie Tropicale , Limoges , France.|b Univ. Limoges, UMR_S 1094, Neuroépidémiologie Tropicale , Institut d'Epidémiologie Neurologique et de Neurologie Tropicale, CNRS FR 3503 GEIST , Limoges , France.|c Section of Neurosciences, Department GF Ingrassia , University of Catania , Catania , Italy.
authors: Rosario
authors: R
authors: Vasta
authors: a INSERM, U1094, Neuroépidémiologie Tropicale , Limoges , France.|b Univ. Limoges, UMR_S 1094, Neuroépidémiologie Tropicale , Institut d'Epidémiologie Neurologique et de Neurologie Tropicale, CNRS FR 3503 GEIST , Limoges , France.|e CHU Limoges, Centre d'Epidémiologie de Biostatistique et de Méthodologie de la Recherche , Limoges , France.
authors: Farid
authors: F
authors: Boumédiene
authors: a INSERM, U1094, Neuroépidémiologie Tropicale , Limoges , France.|b Univ. Limoges, UMR_S 1094, Neuroépidémiologie Tropicale , Institut d'Epidémiologie Neurologique et de Neurologie Tropicale, CNRS FR 3503 GEIST , Limoges , France.|d CHU Limoges, Service de Neurologie, Centre Expert SLA , Limoges , France , and.
authors: Philippe
authors: P
authors: Couratier
authors: a INSERM, U1094, Neuroépidémiologie Tropicale , Limoges , France.|b Univ. Limoges, UMR_S 1094, Neuroépidémiologie Tropicale , Institut d'Epidémiologie Neurologique et de Neurologie Tropicale, CNRS FR 3503 GEIST , Limoges , France.|d CHU Limoges, Service de Neurologie, Centre Expert SLA , Limoges , France , and.
authors: Marie
authors: M
authors: Nicol
authors: c Section of Neurosciences, Department GF Ingrassia , University of Catania , Catania , Italy.
authors: Alessandra
authors: A
authors: Nicoletti
authors: a INSERM, U1094, Neuroépidémiologie Tropicale , Limoges , France.|b Univ. Limoges, UMR_S 1094, Neuroépidémiologie Tropicale , Institut d'Epidémiologie Neurologique et de Neurologie Tropicale, CNRS FR 3503 GEIST , Limoges , France.|e CHU Limoges, Centre d'Epidémiologie de Biostatistique et de Méthodologie de la Recherche , Limoges , France.
authors: Pierre-Marie
authors: PM
authors: Preux
authors: a INSERM, U1094, Neuroépidémiologie Tropicale , Limoges , France.|b Univ. Limoges, UMR_S 1094, Neuroépidémiologie Tropicale , Institut d'Epidémiologie Neurologique et de Neurologie Tropicale, CNRS FR 3503 GEIST , Limoges , France.|e CHU Limoges, Centre d'Epidémiologie de Biostatistique et de Méthodologie de la Recherche , Limoges , France.
authors: Benoit
authors: B
authors: Marin
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology*; D000704:Analysis of Variance; D018672:Community Health Planning; D005260:Female; D005602:France / Q000453:epidemiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D009313:National Health Programs / Q000706:statistics & numerical data*; D016017:Odds Ratio; D010351:Patient Discharge / Q000706:statistics & numerical data*; D012042:Registries / Q000706:statistics & numerical data*; D015203:Reproducibility of Results; D012189:Retrospective Studies
keywords: Amyotrophic lateral sclerosis; administrative database research; epidemiology; hospital morbidity data; insurance data; positive predictive value; sensitivity