Validation of the functional assessment of multiple sclerosis quality of life instrument

D. F. Cella*, K. Dineen, B. Arnason, A. Reder, K. A. Webster, G. Karabatsos, C. Chang, S. Lloyd, F. Mo, J. Stewart, D. Stefoski

*Corresponding author for this work

Research output: Contribution to journalArticle

321 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)129-139
Number of pages11
JournalNeurology
Volume47
Issue number1
DOIs
StatePublished - Jan 1 1996

Fingerprint

Multiple Sclerosis
Quality of Life
Reproducibility of Results
Nervous System
Literature
Postal Service
Fatigue
Language
Clinical Trials
Interviews
Depression
Neoplasms
Surveys and Questionnaires
Therapeutics
Thinking

ASJC Scopus subject areas

  • Clinical Neurology

Cite this

Cella, D. F. ; Dineen, K. ; Arnason, B. ; Reder, A. ; Webster, K. A. ; Karabatsos, G. ; Chang, C. ; Lloyd, S. ; Mo, F. ; Stewart, J. ; Stefoski, D. / Validation of the functional assessment of multiple sclerosis quality of life instrument. In: Neurology. 1996 ; Vol. 47, No. 1. pp. 129-139.
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abstract = "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.",
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Cella, DF, Dineen, K, Arnason, B, Reder, A, Webster, KA, Karabatsos, G, Chang, C, Lloyd, S, Mo, F, Stewart, J & Stefoski, D 1996, 'Validation of the functional assessment of multiple sclerosis quality of life instrument', Neurology, vol. 47, no. 1, pp. 129-139. https://doi.org/10.1212/WNL.47.1.129

Validation of the functional assessment of multiple sclerosis quality of life instrument. / Cella, D. F.; Dineen, K.; Arnason, B.; Reder, A.; Webster, K. A.; Karabatsos, G.; Chang, C.; Lloyd, S.; Mo, F.; Stewart, J.; Stefoski, D.

In: Neurology, Vol. 47, No. 1, 01.01.1996, p. 129-139.

Research output: Contribution to journalArticle

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T1 - Validation of the functional assessment of multiple sclerosis quality of life instrument

AU - Cella, D. F.

AU - Dineen, K.

AU - Arnason, B.

AU - Reder, A.

AU - Webster, K. A.

AU - Karabatsos, G.

AU - Chang, C.

AU - Lloyd, S.

AU - Mo, F.

AU - Stewart, J.

AU - Stefoski, D.

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