Quality of life in amyotrophic lateral sclerosis/motor neuron disease: a structured review.

Journal article

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.

Authors: Epton, J; Harris, R; Jenkinson, C

• Publication status: Published
• Journal: Amyotrophic lateral sclerosis : official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases
• Volume: 10
• Issue: 1
• Pages: 15-26
• Publication date: 2009-02-01
• DOI: 10.1080/17482960802163721
• EISSN: 1471-180X
• ISSN: 1748-2968
• Language: English
• Keywords: Health Surveys; Sickness Impact Profile; Health Status; Questionnaires; Random Allocation; Humans; Motor Neuron Disease; Quality of Life; Review Literature as Topic; Amyotrophic Lateral Sclerosis; Reproducibility of Results