title: Time to diagnosis in the National Registry of Veterans with Amyotrophic Lateral Sclerosis.
abstract: Our objective was to determine the interval from symptom onset to diagnosis, and to evaluate associated factors in a cohort of U.S. Veterans with motor neuron diseases. We retrospectively evaluated 1359 patients enrolled in the National Registry of Veterans with Amyotrophic Lateral Sclerosis (ALS). The main outcome measures were time from symptom onset to first diagnosis and to second opinion. Predictor variables included age at symptom onset, year of symptom onset, race, onset site, final diagnosis, number of diagnostic tests performed and clinical sites visited. Median time to first diagnosis was 11 months; median time to second opinion was two months. In a multivariable model, more recent calendar year of symptom onset, younger age, bulbar onset and a diagnosis of ALS versus non-ALS motor neuron disease were all significantly associated with a shorter time to first diagnosis. Later year of symptom onset and white race were significantly associated with a shorter time to second opinion. While the interval from symptom onset to diagnosis, and many of the associated factors are similar between our large cohort of U.S. Veterans with ALS and other smaller published cohorts, we found that the diagnostic interval among U.S. Veterans has significantly decreased over time.
authors.affiliation: Unity Health System, Rochester, New York, USA.
authors.forename: Natan
authors.initials: N
authors.lastname: Khishchenko
authors.forename: Kelli D
authors.initials: KD
authors.lastname: Allen
authors.forename: Cynthia J
authors.initials: CJ
authors.lastname: Coffman
authors.forename: Edward J
authors.initials: EJ
authors.lastname: Kasarskis
authors.forename: Jennifer H
authors.initials: JH
authors.lastname: Lindquist
authors.forename: Joel C
authors.initials: JC
authors.lastname: Morgenlander
authors.forename: Barbara B
authors.initials: BB
authors.lastname: Norman
authors.forename: Eugene Z
authors.initials: EZ
authors.lastname: Oddone
authors.forename: Marvin P
authors.initials: MP
authors.lastname: Rozear
authors.forename: Arman
authors.initials: A
authors.lastname: Sabet
authors.forename: Laura
authors.initials: L
authors.lastname: Sams
authors.forename: Richard S
authors.initials: RS
authors.lastname: Bedlack
mesh_terms: D000293:Adolescent; D000328:Adult; D001741:Black or African American / Q000706:statistics & numerical data; D017677:Age Distribution; D017668:Age of Onset; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis* / Q000453:epidemiology*; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D011237:Predictive Value of Tests; D012042:Registries / Q000706:statistics & numerical data*; D012044:Regression Analysis; D017678:Sex Distribution; D013997:Time Factors; D014481:United States / Q000453:epidemiology; D014493:United States Department of Veterans Affairs / Q000706:statistics & numerical data*; D014728:Veterans / Q000706:statistics & numerical data*; D044465:White People / Q000706:statistics & numerical data