ALS C.A.R.E. Publications


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

UMMS Affiliation

Center for Outcomes Research

Publication Date


Document Type



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.

Journal/Book/Conference Title

Amyotrophic lateral sclerosis and other motor neuron disorders : official publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases

Related Resources

Link to Article in PubMed

PubMed ID