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From the Rush-Presbyterian-St. Luke's Medical Center (Drs. Cella, Chang, Lloyd, Stewart, and Stefoski and Ms. Dineen, Ms. Webster, Mr. Karabatsos and Ms. Mo); and the University of Chicago Medical School (Drs. Arnason and Reder), Chicago, IL.
Supported by an unrestricted grant from Berlex Laboratories, Inc.
Received October 12, 1995. Accepted in final form January 4, 1996.
Address correspondence and reprint requests to Dr. David F. Cella, Department of Psychology and Social Sciences, Division of Psychosocial Oncology, 1725 West Harrison, Suite 863, Chicago, IL 60612.
Based on scientific literature and interviews with clinicians and patients, we developed a quality of life instrument for use with people with MS called the Functional Assessment of Multiple Sclerosis (FAMS).The initial item pool consisted of 88 questions: 28 from the general version of the Functional Assessment of Cancer Therapy quality of life instrument, plus 60 generated by patients, providers, and literature review. The validation samples comprised a mail survey cohort (N = 377) and a clinical cohort (N = 56). Both cohorts provided evidence for internal consistency of the derived subscales, test-retest reliability, content validity, concurrent validity, and construct validity. Principal components and Rasch measurement model analyses were applied sequentially to survey sample data, reducing test length to 44 questions, divided into six subscales: mobility, symptoms, emotional well-being (depression), general contentment, thinking/fatigue, and family/social well-being. Fifteen initially rejected questions were added back as miscellaneous (unscored) questions for their potential clinical and empirical value. The mobility subscale was strongly predictive of the Kurtzke Extended Disability Status Scale and the Scripps Neurologic Rating Scales. The other five subscales were not, indicating they measure aspects of patient quality of life not captured by the neurologic exam. The final 59-item English language instrument (FAMS version 2) is available for inclusion in clinical trials and clinical practice.
NEUROLOGY 1996;47: 129-139
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