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Amyotrophic Lateral Sclerosis Functional Rating Scale

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Purpose

The ALSFRS-R measures activities of daily living (ADL) and global function for patients with Amyotrophic Lateral Sclerosis (ALS). The ALSFRS-R provides a physicians-generated estimate of patient’s degree of functional impairment, which can be evaluated serially to objectively assess any response to treatment or progression of disease.

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Instrument Details

Acronym ALSFRS

Cost

Free

Diagnosis/Conditions

  • Parkinson's Disease & Movement Disorders

Populations

Amyotrophic Lateral Sclerosis

Key Descriptions

  • 12-question scale with 5 possible responses each (0-indicates unable to 4-indicates normal ability).
  • Individual item scores are added to produce a reported score of between 0 = worst and 48 = best.
  • The ALSFRS-R is easy to administer face-to-face or via telephone.

Number of Items

12

Time to Administer

10 minutes

Required Training

No Training

Instrument Reviewers

Initially reviewed by Hisham Alkhatib, PT in October 2013.

ICF Domain

Participation
Activity

Considerations

Amytrophic Lateral Sclerosis: (Cedarbaum et al., 2004)

  • ALSFRS-R assesses fine motor and gross motor skills, but this is not equivalent to ADL performance.

  • ALSFRS-R does not assess behavior such as motivation or disinhibition.

  • The ALSFRS-R is very accessible because it can be administered via telephone. This can be very desirable for ALS patients that may have difficulty attending a clinic secondary to limitations in mobility and overall progressive decline in patients’ statuses due to the nature of the disease.

  • Completion of data collection will likely be high secondary to the ease of test administration.

  • The ALFRS may provide a way to monitor patients’ progress day-to-day in clinical care secondary to the rate of progression being related to remaining disease duration.

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Amyotrophic Lateral Sclerosis

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Standard Error of Measurement (SEM)

Amyotrophic Lateral Sclerosis:

(Miano et al, 2004; n = 44; average standard deviation (SD) for provider, caregiver and patient = 9.166)

  • SEM = 2.43
  • In this study, 44 consecutive ALS patients were assessed at baseline and then longitudinally at approximately every 3 months totaling 4 visits. The SEM used is from the baseline scores.

Minimal Detectable Change (MDC)

Amyotrophic Lateral Sclerosis:

(Miano et al, 2004)

  • MDC = 6.74

Minimally Clinically Important Difference (MCID)

Amyotrophic Lateral Sclerosis:

(Castro-Viguera et al, 2010; n = 65)

  • A survey was mailed to 65 clinicians and clinical researchers of Northeast ALS Consortium (NEALS) to establish the percentage of changes in decline of the ALSFRS-R score that is considered clinically meaningful.
  • 90% of the clinicians rated a 20% change of the ALSFRS-R score to be clinically meaningful (a score of 4 or higher)
  • 100% of the clinicians rated a 25% or higher change was somewhat meaningful (a score of 4 or higher).
  • 93% of clinicians rated a 50% change in decline was very meaningful (score of 7).

Normative Data

Amyotrophic Lateral Sclerosis:

(Miano et al, 2004;)

  • Mean (SD) ALSFRS-R score for provider; 33.0 (9.0), range = 11 to 47
  • Mean (SD) ALSFRS-R score for patient; 35.1 (9.0), range = 15 to 48
  • Mean (SD) ALSFRS-R score for caregiver; 34.2 (9.5), range = 13 to 48

Test/Retest Reliability

Amytrophic Lateral Sclerosis:

(Cedarbaum et al, 1997; n = 245; ALS patients; detail on age not given; 9-month trial)

  • The ALS CNTF Treatment Study (ACTS) was a 9-month trial in 36 centers in the US and Canada. The ALSFRS, along with Schwab and England and the GCIC scales, were administered monthly.
  • Excellent test-retest reliability (ICC = 0.95)

Interrater/Intrarater Reliability

Amytrophic Lateral Sclerosis:

(Kaufmann et al, 2007)

  • Excellent interrater reliability when administered by a primary rater; (ICC = 0.93)
  • Excellent interrater reliability when administered by a back-up rater, n = 9 (ICC = 0.93)
  • Excellent intrarater reliability, n = 41 (ICC = 0.95)
  • Excellent reliability when test is administered on telephone, n = 27 (ICC = 0.97)

(Miano et al, 2004)

  • Excellent interrater/intrarater reliability (ICC = 0.87 to 0.96)

Internal Consistency

Amytrophic Lateral Sclerosis:

(Gordon et al, 2004)

  • Excellent internal consistency (Cronbach’s alpha = 0.815)

Criterion Validity (Predictive/Concurrent)

Amytrophic Lateral Sclerosis:

(Brooks et al, 1996; n = 53, 38 males, 15 females)

  • The sensitivity of ALSFRS scores to change in 53 patients’ statuses over time was assessed in this two phased trial. The ALSFRS scores declined together in motor and pulmonary function indicating its sensitivity to change.
  • Excellent correlation ALFRS with Megascore (r = 0.71)
  • Excellent correlation ALFRS versus Schwab and England scale (correlation coefficient = 0.70)
  • Excellent correlation ALFRS versus GCIC scale (correlation coefficient for clinician = 0.56 for clinician)
  • Adequate correlation ALFRS vs GCIC scale correlation coefficient for clinician = 0.56 for clinician)

Content Validity

Amytrophic Lateral Sclerosis:

(Brooks et al, 1996)

  • Items for the questionnaire were designed to supplement the standard outcome measures of mortality, muscle strength and pulmonary function in clinical trials of ALS. Prior to these clinical trials, the ALSFRS was validated in two preliminary studies.

Bibliography

Brooks, B., Sanjak, M., et al. (1996). "The amyotrophic lateral sclerosis functional rating scale-Assessment of activities of daily living in patients with amyotrophic lateral sclerosis." Archives of Neurology 53(2): 141-147.

Castrillo-Viguera, C., Grasso, D. L., et al. (2010). "Clinical significance in the change of decline in ALSFRS-R." Amyotroph Lateral Scler 11(1-2): 178-180. Find it on PubMed

Cedarbaum, J. M. and Stambler, N. (1997). "Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials." J Neurol Sci 152 Suppl 1: S1-9. Find it on PubMed

Gordon, P. H., Miller, R. G., et al. (2004). "Alsfrs-R." Amyotroph Lateral Scler Other Motor Neuron Disord 5 Suppl 1(S1): 90-93. Find it on PubMed

Kaufmann, P., Levy, G., et al. (2007). "Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicenter clinical trial." Amyotroph Lateral Scler 8(1): 42-46. Find it on PubMed

Miano, B., Stoddard, G. J., et al. (2004). "Inter-evaluator reliability of the ALS functional rating scale." Amyotroph Lateral Scler Other Motor Neuron Disord 5(4): 235-239. Find it on PubMed