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 Fun...

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Bibliographic Details
Published in:Amyotrophic lateral sclerosis 2012-02, Vol.13 (2), p.210-216
Main Authors: Maier, André, Holm, Teresa, Wicks, Paul, Steinfurth, Laura, Linke, Peter, Münch, Christoph, Meyer, Robert, Meyer, Thomas
Format: Article
Language:English
Subjects:
Activities of Daily Living
Adult
Aged
Aged, 80 and over
ALS Functional Rating Scale
ALSFRS-R
Ambulatory Care Facilities
Amyotrophic lateral sclerosis
Amyotrophic Lateral Sclerosis - physiopathology
Disease Progression
Female
Humans
Internet
Male
Middle Aged
online self-assessment
Original
patient reported outcomes
Prospective Studies
Self-Assessment
Severity of Illness Index
Surveys and Questionnaires
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Summary: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.
ISSN:1748-2968
1471-180X
DOI:10.3109/17482968.2011.633268