title: Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial.
abstract: Self-assessment of symptom progression in chronic diseases is of increasing importance in clinical research, patient management and specialized outpatient care. Against this background, we developed a secure internet platform (ALShome.de) that allows online assessment of the revised ALS Functional Rating Scale (ALSFRS-R) and other established self-assessment questionnaires. We developed a secure and closed internet portal to assess patient reported outcomes. In a prospective, controlled and stratified study, patients conducted a web-based self-assessment of ALSFRS-R compared to on-site assessment. On-site and online assessments were compared at baseline (n = 127) and after 3.5 months (n = 81, 64%). Results showed that correlation between on-site evaluation and online testing of ALSFRS-R was highly significant (r = 0.96; p < 0.001). The agreement of both capturing methods (online vs. on-site) was excellent (mean interval, 8.8 days). The adherence to online rating was high; 75% of patients tested on-site completed a follow-up online visit (mean 3.5 months, SD 1.7). We conclude that online self-assessment of ALS severity complements the well-established face-to-face application of the ALSFRS-R during on-site visits. The results of our study support the use of online administration of ALSFRS-R within clinical trials and for managing the care of ALS patients.
authors.affiliation: Department of Neurology, Charité-University Hospital, Campus Virchow-Klinikum, Augustenburger Platz 1, Berlin, Germany.
authors.forename: André
authors.initials: A
authors.lastname: Maier
authors.forename: Teresa
authors.initials: T
authors.lastname: Holm
authors.forename: Paul
authors.initials: P
authors.lastname: Wicks
authors.forename: Laura
authors.initials: L
authors.lastname: Steinfurth
authors.forename: Peter
authors.initials: P
authors.lastname: Linke
authors.forename: Christoph
authors.initials: C
authors.lastname: Münch
authors.forename: Robert
authors.initials: R
authors.lastname: Meyer
authors.forename: Thomas
authors.initials: T
authors.lastname: Meyer
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000554:Ambulatory Care Facilities; D000690:Amyotrophic Lateral Sclerosis / Q000503:physiopathology*; D018450:Disease Progression; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D012647:Self-Assessment; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires