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Amyotrophic lateral sclerosis/motor neuron disease and other related disorders are fatal progressive neurodegenerative conditions that have a substantial impact on quality of life (QoL). This systematic review examines the different methods and instruments used to assess QoL in this condition from which recommendations are made of those that evidence suggests are the most appropriate. Databases were used to survey the available literature to cover as many different approaches and papers as possible. Due to the wide variety of approaches to the measurement of QoL data across the papers, no meta-analysis was possible. The available evidence suggests that at the present time the most appropriate measures are the SF-36, a generic widely used QoL measure, and the disease specific ALSAQ-40. However, as many of the validation studies on the ALSAQ-40 were undertaken by the developers of this instrument, further independent research is desirable to confirm these conclusions.

Original publication

DOI

10.1080/17482960802163721

Type

Journal article

Journal

Amyotroph Lateral Scler

Publication Date

02/2009

Volume

10

Pages

15 - 26

Keywords

Amyotrophic Lateral Sclerosis, Health Status, Health Surveys, Humans, Motor Neuron Disease, Quality of Life, Random Allocation, Reproducibility of Results, Review Literature as Topic, Sickness Impact Profile, Surveys and Questionnaires