title: Accurate ALSFRS-R scores can be generated from retrospective review of clinic notes.
abstract: Retrospective studies are important in ALS but require markers of disease severity to enable risk adjustment and to allow fair comparisons between patient groups. The ALSFRS-R could be used as such a measure. This study aimed to determine if accurate ALSFRS-R scores could be generated by reviewing clinic notes. Five investigators reviewed 100 de-identified clinic notes to generate estimated ALSFRS-R scores. These scores were compared to ALSFRS-R scores completed by patients within three months of the clinic note. The retrospective ALSFRS-R scores did not differ significantly from the actual scores (mean retrospective score 38.7+/-5 vs. actual score 38.4+/-6, p =0.5). The intra-class correlation coefficient between actual and retrospective scores confirmed reasonable agreement (rho = 0.53, p <0.001). Bland Altman analysis also confirmed good agreement between the actual and retrospective scores. This study indicates that ALSFRS-R scores can be accurately reproduced from information in clinic notes and should be considered as a marker of disease severity for use in retrospective studies.
authors.affiliation: Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland 21205, USA. nlechtz1@jhmi.edu
authors.forename: Noah
authors.initials: N
authors.lastname: Lechtzin
authors.forename: Nicholas J
authors.initials: NJ
authors.lastname: Maragakis
authors.forename: Richard
authors.initials: R
authors.lastname: Kimball
authors.forename: Anne
authors.initials: A
authors.lastname: Busse
authors.forename: Virginia
authors.initials: V
authors.lastname: Hoffman
authors.forename: Lora
authors.initials: L
authors.lastname: Clawson
mesh_terms: D000554:Ambulatory Care Facilities; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis / Q000503:physiopathology*; D006801:Humans; D008499:Medical Records; D011379:Prognosis; D012189:Retrospective Studies; D012720:Severity of Illness Index