Amyotrophic Lateral Sclerosis Assessment Questionnaire - ALSAQ
The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ) is a patient self-report health status PRO. The ALSAQ is specifically used to measure the subjective well-being of patients with amyotrophic lateral sclerosis (ALS, commonly referred to as Lou Gehrig's Disease) and the wider condition of motor neurone disease (MND).
The available treatments for ALS/MND are not curative and the purpose of interventions is to improve quality of life and increase survival. Consequently, it is important that clinicians have a reliable and effective tool for measuring health related quality of life in this patient group.
The research and subsequent development of the ALSAQ PRO was supported by the UK’s Motor Neurone Disease Association.
The ALSAQ is a disease-specific PRO designed and developed for use in assessing areas of importance to patients with ALS/MND, and enables the most effective assessment of these patients because it
- is brief and easy to complete so benefits from an excellent response rate,
- is available in long form (ALSAQ-40) and short form (ALSAQ-5),
- has undergone rigorous testing for validity, reliability and sensitivity to change and has been shown to be a robust tool for assessing ALS/MND,
- can be employed in surveys or clinical trials for ALS/MND patient groups,
- benefits from easy to interpret scores.
The PROs
ALSAQ-40
There are 40 items/questions in the long form amyotrophic lateral sclerosis PRO, the ALSAQ-40, with 5 discrete scales:
- physical mobility (10 items)
- activities of daily living and independence (10 items)
- eating and drinking (3 items)
- communication (7 items)
- emotional reactions (10 items)
Patients are asked to think about the difficulties they may have experienced during the last two weeks (e.g. I have found it difficult to feed myself). Patients are asked to indicate the frequency of each event by selecting one of 5 options (Likert scale):
never/rarely/sometimes/often/always or cannot do at all.
ALSAQ-5
Despite the relative shortness of the 40 point ALSAQ there are certain situations where a shorter form of the instrument may be desirable. For these reasons the developers have created the 5 item, ALSAQ–5 which provides a brief assessment of the impacts of ALS/MND upon patients. Results from the use of ALSAQ–5 have been shown to closely reflect results from the longer form, ALSAQ–40.
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Scoring System
The ALSAQ-40 provides scores for 5 scales: physical mobility, activities of daily living and independence, eating and drinking, communication, and emotional reactions.
Details of the scoring system and administration procedures for ALSAQ-40 and ALSAQ-5 are provided in the ALSAQ User Manual.
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Validated Therapeutic Areas
Amyotrophic lateral sclerosis (Lou Gehrig’s Disease)/Motor neurone disease
Development
The ALSAQ was developed and tested in a comprehensive three stage process. Numerous follow up studies have established the ALSAQ as a sensitive, valid, reliable, acceptable and feasible tool for the assessment of quality of life in ALS/MND patients.
Jenkinson C., Fitzpatrick R., Brennan C., Bromberg M. and Swash M. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: the ALSAQ-40. J Neurology; 246 (Supplement 3): III/16-III/21, 1999.
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Key References
Jenkinson C, Fitzpatrick R. A reduced item set for the Amyotrophic Lateral Sclerosis Assessment Questionnaire: Development and validation of the ALSAQ-5. Journal of Neurology, Neurosurgery and Psychiatry. 70, 70-73, 2001.
Jenkinson C., Fitzpatrick R., Brennan C., and Swash M. Evidence for the validity and reliability of the ALS assessment questionnaire: The ALSAQ-40. ALS and other motor neurone disorders, 1: 33-40. 1999
Jenkinson C., Levvy G., Fitzpatrick R., Garratt A. The amyotrophic lateral sclerosis assessment questionnaire (ALSAQ-40): tests of data quality, score reliability and response rate in a survey of patients. J. Neurological Sci. 180, 94-100, 2000
Jenkinson C., Harris R., Fitzpatrick R. The Amyotrophic lateral Sclerosis Assessment Questionnaire (ALSAQ-40): Evidence for a method of inputting missing data Amyotrophic Lateral Sclerosis. 8: 90-95, 2007
Jenkinson C., Peto V., Jones G., Fitzpatrick R. Interpreting change scores on the Amyotrophic lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Clinical Rehabilitation 17: 380-385, 2003
Jenkinson C., Norquist J., Fitzpatrick R., Deriving summary indices of health status from the Amyotrophic Lateral Sclerosis Assessment Questionanires (ALSAQ-40 and ALSAQ-5). J. Neurosurg. Psychiatry. 74: 242-245, 2003
Jenkinson C., Fitzpatrick R., Swash M., Jones G. Comparison of the 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) with a short-form five-item version (ALSAQ-5) in a longitudinal survey. Clinical Rehabilitation 21: 266-272, 2007
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Available Languages
Click here to access a list of available language versions.
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User Manual
The ALSAQ is supported by a comprehensive user manual. The manual can be provided to licensees from Isis Outcomes on request. The contents can be viewed here.
Example Studies
The ALSAQ is primarily used in clinical trials of new drugs intended to benefit individuals with amyotrophic lateral sclerosis/motor neurone disease.
Useful Links
More information on ALS/MND can be found at:
Amyotrophic Lateral Sclerosis Association www.alsa.org
National Institute of Neurological Disorders & Stroke www.ninds.nih.gov
The website for the University of Oxford’s Department of Primary Health Care, which includes the Division of Public Health & Primary Health Care, can be accessed at: www.publichealth.ox.ac.uk
Request a Licence
A license to use the ALSAQ-40 or ALSAQ-5 can be obtained by completing the online licence request form.
If you would like further information about this PRO please contact one of the Isis Outcomes team.