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
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.
Amyotroph Lateral Scler Other Motor Neuron Disord. 2001 Mar;2(1):31-7.
Amyotrophic lateral sclerosis and other motor neuron disorders : official publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases
Bromberg MB, Anderson FA, Davidson MC, Miller RG. (2001). 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. ALS C.A.R.E. Publications. Retrieved from https://escholarship.umassmed.edu/cor_als/6