title: Diagnostic timelines and delays in diagnosing amyotrophic lateral sclerosis (ALS).
abstract: The objective of this study was to characterize the diagnostic timelines and their predictors in people with amyotrophic lateral sclerosis (ALS). Patients were identified through ALS billing codes. Time from presenting symptom to first doctor visit, first doctor visit to suspected ALS diagnosis, suspected to confirmed ALS diagnosis, and presenting symptom to confirmed ALS diagnosis (total diagnostic time) were collected. Regression models were used to analyze the predictors of diagnostic delay. Three hundred and four ALS patients were included in the analysis. Median total diagnostic time was 11.5 months. Diagnostic timelines were longer in patients with age > 60 years (p < 0.001), sporadic ALS (p = 0.043), and limb onset (p = 0.010). The presence of fasciculations, slurred speech, and lower extremity weakness when symptoms were first noted were independent predictors of shorter time to ALS diagnosis (p = 0.04, p = 0.02, and p = 0.04, respectively). About half of the patients (52%) received an alternative diagnosis and each patient saw an average of three different physicians before ALS diagnosis was confirmed. In conclusion, diagnostic timelines in ALS are long, and patients see many physicians and receive multiple alternative diagnoses before the diagnosis of ALS is confirmed. Older age, sporadic disease, and limb onset can delay ALS diagnosis.
authors: Department of Neurology, Harvard Medical School, Neurological Clinical Research Institute (NCRI), Massachusetts General Hospital , Boston, Massachusetts , USA.
authors: Sabrina
authors: S
authors: Paganoni
authors: Eric A
authors: EA
authors: Macklin
authors: Alexandra
authors: A
authors: Lee
authors: Alyssa
authors: A
authors: Murphy
authors: Judith
authors: J
authors: Chang
authors: Amanda
authors: A
authors: Zipf
authors: Merit
authors: M
authors: Cudkowicz
authors: Nazem
authors: N
authors: Atassi
mesh_terms: D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis*; D057210:Delayed Diagnosis; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011237:Predictive Value of Tests; D012044:Regression Analysis; D012189:Retrospective Studies; D013997:Time Factors
keywords: Diagnosis; delay; predictor; timeline