Objectives: The purpose of the study was to assess the validity and reliability of a new disease specific measure of health-related quality of life for ALS/MND: the 40-item ALS Assessment Questionnaire (ALSAQ-40).
Design: We carried out a longitudinal postal survey. The two administrations of the questionnaire were separated by 3 months.
Sample: Subjects were patients diagnosed with ALS/MND and registered with the UK MND Association.
Results: Dimensions of the ALSAQ-40 were shown to have high levels of internal reliability. The ALSAQ-40 was found to be sensitive to changes in self reported overall health state.
Conclusion: We concluded that the ALSAQ-40 has high levels of reliability and validity and can be used as an outcome measure in studies evaluating new treatment regimes and therapies.