Assessing health status quality of life in ALS: comparison of the SIP/ALS-19 with the ALS Functional Rating Scale and the Short Form-12 Health Survey. ALS C.A.R.E. Study Group. Clinical Assessement, Research, and Education
Center for Outcomes Research
Medical Subject Headings
Activities of Daily Living; Adult; Aged; Aged, 80 and over; Disability Evaluation; Female; Follow-Up Studies; *Health Status; Humans; Male; Middle Aged; Motor Neuron Disease; Psychometrics; *Quality of Life; *Sickness Impact Profile
Health Services Research
BACKGROUND: The progressive loss of function affects the quality of life of the ALS patient. Quality of life depends on a spectrum of factors. Available instruments for assessment include questionnaires developed for generic illness-related disabilities and ALS-specific questionnaires that focus on function.
METHODS: Comparisons were made between two ALS-specific questionnaires (ALS Functional Rating Scale and SIP/ALS-19) and a generic instrument (Short Form-12) given to 1,513 patients from the (North American) ALS Patient Care Database.
RESULTS: The SIP/ALS-19 correlates well with the ALS Functional Rating Scale and less well with the Short Form-12.
CONCLUSIONS: The SIP/ALS-19 can be used as an effective surrogate for the ALS Functional Rating Scale, with the advantage that the SIP/ALS-19 also includes questions that encompass the psychological and social domains of quality of life.
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Citation: Amyotroph Lateral Scler Other Motor Neuron Disord. 2001 Mar;2(1):31-7.
Bromberg, M. B.; Anderson, Frederick A. Jr.; Davidson, Matthew C.; and Miller, Robert G., "Assessing health status quality of life in ALS: comparison of the SIP/ALS-19 with the ALS Functional Rating Scale and the Short Form-12 Health Survey. ALS C.A.R.E. Study Group. Clinical Assessement, Research, and Education" (2001). ALS C.A.R.E. Publications. Paper 6.