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Rehab Measures: Amyotrophic Lateral Sclerosis Functional Rating Scale

Link to instrument

 

Title of Assessment

Amyotrophic Lateral Sclerosis Functional Rating Scale 

Acronym

ALSFRS

Instrument Reviewer(s)

Initially reviewed by Hisham Alkhatib, PT in October 2013.

Summary Date

1/3/2014 

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.

Description

  • 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

Area of Assessment

 

Body Part

 

ICF Domain

Activity; Participation 

Domain

 

Assessment Type

 

Length of Test

06 to 30 Minutes 

Time to Administer

Approximately 10 minutes

Number of Items

12 

Equipment Required

None

Training Required

None

Type of training required

no training 

Cost

Free 

Actual Cost

None

Age Range

 

Administration Mode

 

Diagnosis

 

Populations Tested

Patients with all stages of Amyotrophic Lateral Sclerosis

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).

Cut-Off Scores

Not established

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)

Construct Validity (Convergent/Discriminant)

Not established

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.

Face Validity

Not established

Floor/Ceiling Effects

Not established

Responsiveness

Not established

Professional Association Recommendations

 

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.

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

Year published

1996 

Instrument in PDF Format

Yes 
Approval Status Approved 
 
Attachments
Created at 1/3/2014 3:04 PM  by Jason Raad 
Last modified at 6/6/2014 12:05 PM  by Jason Raad