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Measuring function in advanced ALS: validation of ALSFRS-EX extension items.

P Wicks1, M P Massagli, C Wolf

  • 1PatientsLikeMe Inc, Research & Development, Cambridge, MA 02142, USA. pwicks@patientslikeme.com

European Journal of Neurology
|April 15, 2009
PubMed
Summary
This summary is machine-generated.

New items were developed to enhance the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised (ALSFRS-R) for patients with advanced ALS. These additions improve functional assessment at the end of life.

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Area of Science:

  • Neurology
  • Rehabilitation Medicine
  • Biomedical Engineering

Background:

  • Patients with amyotrophic lateral sclerosis (ALS) often require assistive technology, enabling survival beyond traditional functional assessment limits.
  • There is a critical need to monitor functional status in advanced ALS, especially for those with severe impairment or locked-in syndrome.

Purpose of the Study:

  • To develop and pilot new items for the ALSFRS-R scale to enhance sensitivity in assessing physical function at lower levels.
  • To improve the assessment of patients with advanced ALS, particularly those using assistive technology.

Main Methods:

  • Utilized an online patient community (PatientsLikeMe) for people with ALS (PALS) to generate new scale items.
  • Surveyed PALS with advanced disease to create and pilot potential additions to the ALSFRS-R.
  • Collected baseline data from 326 PALS, with follow-up retests at 1 week (n=169) and 3 months (n=218).

Main Results:

  • Ten new scale items were generated from patient input.
  • The new items were added to the existing ALSFRS-R for data collection.
  • Test-retest reliability was assessed over 1 week and 3 months.

Conclusions:

  • Three new items were selected that align with the ALSFRS-R's factor structure.
  • Selected items assess finger manipulation of devices, facial emotional expression, and indoor mobility.
  • Further real-world validation is required to confirm the utility of the new ALSFRS-EX scale.