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 Occasional condition of motor neurone disease (MND).

Background

The available treatments for ALS / MND are not curative and the purpose of interventions is to improve quality of life and increase survival.

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 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.

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.

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.

Example Studies

The ALSAQ is used in clinical trials of new drugs intended to benefit individuals with amyotrophic lateral sclerosis / motor neurone disease.

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