The Accuracy of Discharge Diagnosis Coding for Amyotrophic Lateral Sclerosis in a Large Teaching Hospital

• Published in: European journal of epidemiology Vol. 24; no. 10; pp. 635 - 640
• Main Authors: Pisa, Federica Edith, Verriello, Lorenzo, Deroma, Laura, Drigo, Daniela, Bergonzi, Paolo, Gigli, Gian Luigi, Barbone, Fabio
• Format: Journal Article
• Language: English
• Published: Dordrecht Springer 01.10.2009; Springer Netherlands; Springer Nature B.V
• Subjects: Amyotrophic lateral sclerosis; Amyotrophic Lateral Sclerosis - diagnosis; Amyotrophic Lateral Sclerosis - epidemiology; Archives & records; Biological and medical sciences; Cardiology; Degenerative and inherited degenerative diseases of the nervous system. Leukodystrophies. Prion diseases; Epidemiology; Forms and Records Control - standards; General aspects; Gold standard; Hospital records; Hospitals, Teaching; Humans; Infectious Diseases; International Classification of Diseases; International Statistical Classification of Diseases; Italy - epidemiology; Medical coding; Medical Records - standards; Medical sciences; Medicine; Medicine & Public Health; Miscellaneous; Motor neuron disease; Neuro-Epidemiology; Neurology; Oncology; Patient Discharge - statistics & numerical data; Peripheral nervous system diseases; Predictive Value of Tests; Public Health; Public health. Hygiene; Public health. Hygiene-occupational medicine; Registries - standards; Reproducibility of Results; Sensitivity and Specificity; Symptoms; Teaching hospitals; Italy; Friuli-Venezia Giulia Italy; Hospital morbidity data; Amyotrophic lateral sclerosis; Disease registries; Sensitivity; Specificity; Incidence; Human; Nervous system diseases; Teaching hospital; Hospitalization; Epidemiology; Morbidity; Accuracy; Register; Central nervous system disease; Degenerative disease; Diagnosis; Hospital; Spinal cord disease; Public health
• ISSN: 0393-2990; 1573-7284
• DOI: 10.1007/s10654-009-9376-1

To evaluate the accuracy of hospital discharge data as a source of Amyotrophic Lateral Sclerosis (ALS) cases for epidemiological studies or disease registries, a validation study was performed. All records of patients discharged in 2005 and 2006 with principal or secondary International Classification of Diseases, 9th rev., Clinical Modification (ICD 9 CM) diagnosis code of ALS (335.20), other anterior horn cell disease (335), spinal cord disease (336), hereditary and idiopathic peripheral neuropathy (356), inflammatory and toxic neuropathy (357), myoneural disorders (358), muscular dystrophies and myopathies (359), were selected from the electronic archive of discharge data of the University Hospital of Udine, Friuli Venezia Giulia Region, North East Italy. Corresponding clinical documentation was reviewed to ascertain the presence of El Escorial criteria, the gold standard. Sensitivity of the ICD 9 CM discharge code 335.20 was 93% (95% CI: 82–99%) and decreased to 91% (95% CI: 77–98%) when suspect ALS was excluded. Specificity was 99% (95% CI: 97–99%). The ICD 9 CM discharge code 335.20 can identify a high percentage of hospitalizations of patients truly affected by ALS and of patients with no ALS, among selected neurological diagnostic codes. To ensure complete ALS case ascertainment, prospective population- based registries or epidemiologic studies require active prospective surveillance and use of multiple sources, among them hospital discharge archives can provide accurate information.