This subproject is one of many research subprojects utilizing theresources provided by a Center grant funded by NIH/NCRR. The subproject andinvestigator (PI) may have received primary funding from another NIH source,and thus could be represented in other CRISP entries. The institution listed isfor the Center, which is not necessarily the institution for the investigator.Amyotrophic lateral sclerosis (ALS) and its related motor neuron disorders are progressive, devastating, neurological diseases causing muscle weakness, breathing failure, and death, usually within 3 to 5 years. In most patients, the cause is unknown. The purpose of the 'Measuring Quality of Life in Individuals with Amyotrophic Lateral Sclerosis' study is to better understand factors contributing to quality of life in ALS patients. This information will be used to test the ALS-Specific Quality of Life Instrument (ALSSQOL). This is a brief, accurate questionnaire specifically designed to evaluate quality of life in individuals with ALS. In addition to validating the shorter, easier to administer 46-item version of the ALSSQOL, this study will also look at data on the age, gender, race (if data permit), and diagnosis of ALS patients. The study will also measure quality of life, spirituality, religiosity, physical function, and intimacy, positive and negative affect, coping, and social support, according to the ALSSQOL and other measures. At one of their regular ALS appointments, patients consenting to this study will be asked to complete a series of questionnaires and interviews. This information will be collected only once, adding 45-50 minutes to one regularly scheduled ALS appointment visit. The questionnaires and interviews will ask about physical limitations, emotions, coping abilities, values, interests, desires, goals, the support received from others, and the role of religion in study patients' lives. There is no physical discomfort and no physical risk associated with this study. It is not a treatment study. No medication will be given in association with this study.
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