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Development and evaluation of a self-administered version of the ALSFRS-R
1Eleanor and Lou Gehrig MDA/ALS Research Center, Department of Neurology, College of Physicians and Surgeons, Columbia University, New York, NY 10032. jm598@columbia.edu
Neurology
|October 13, 2006
Summary
A new self-administered ALSFRS-R demonstrated excellent reliability and comparable sensitivity to change over time compared to the evaluator-administered version, offering a viable alternative for ALS patient monitoring.
Area of Science:
- Neurology
- Clinical Assessment
- Rehabilitation Medicine
Background:
- The standard ALSFRS-R requires evaluator administration, which can be time-consuming and resource-intensive.
- Assessing functional decline in Amyotrophic Lateral Sclerosis (ALS) is crucial for patient management and clinical trials.
- Developing patient-centered assessment tools is a priority in chronic disease management.
Purpose of the Study:
- To evaluate the reliability and sensitivity to change of a novel self-administered ALSFRS-R.
- To compare the psychometric properties of the self-administered ALSFRS-R with the standard evaluator-administered version.
Main Methods:
- A cohort of 60 consecutive ALS patients from a specialized clinic participated.
- The reliability was assessed using intraclass correlation coefficients.
- Sensitivity to change was evaluated by comparing changes over time with the standard ALSFRS-R.
Main Results:
- The self-administered ALSFRS-R exhibited excellent reliability (intraclass correlation = 0.93, 95% CI: 0.88 to 0.96).
- The self-administered version demonstrated sensitivity to change over time comparable to the evaluator-administered ALSFRS-R.
Conclusions:
- The self-administered ALSFRS-R is a reliable and valid tool for assessing functional status in ALS patients.
- This self-administered version offers a practical alternative for routine monitoring and clinical research, potentially improving patient engagement and reducing healthcare burdens.

