Neurology
HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS
QUICK SEARCH:   [advanced]


     

This Article
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow Data Supplement
Right arrow Correspondence:
Submit a response
Right arrow Alert me when this article is cited
Right arrow Alert me when Correspondence are posted
Right arrow Alert me if a correction is posted
Right arrow Citation Map
Services
Right arrow Email this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Download to citation manager
Right arrow reprints & permissions
Citing Articles
Right arrow Citing Articles via HighWire
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by Simmons, Z.
Right arrow Articles by McCluskey, L.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Simmons, Z.
Right arrow Articles by McCluskey, L.
Related Collections
Right arrow All Education
NEUROLOGY 2006;67:1659-1664
© 2006 American Academy of Neurology

The ALSSQOL

Balancing physical and nonphysical factors in assessing quality of life in ALS

Z. Simmons, MD, S. H. Felgoise, PhD, B. A. Bremer, PhD, S. M. Walsh, RN, D. J. Hufford, PhD, M. B. Bromberg, MD, PhD, W. David, MD, PhD, D. A. Forshew, RN, T. D. Heiman-Patterson, MD, E. C. Lai, MD, PhD and L. McCluskey, MD

From the Department of Neurology (Z.S.), Penn State College of Medicine, Hershey, PA; Department of Psychology (S.H.F), Philadelphia College of Osteopathic Medicine, Philadelphia, PA; Department of Psychology (B.A.B.), Penn State Harrisburg, Middletown, PA; ALS Association Greater Philadelphia Chapter (S.M.W.), Ambler, PA; Department of Humanities (D.J.H), Penn State College of Medicine, Hershey, PA; Department of Neurology (M.B.B.), University of Utah, Salt Lake City, UT; Department of Neurology (W.D.), University of Minnesota, Minneapolis, MN; Department of Neurology (D.A.F.), University of California at San Francisco, San Francisco, CA; Department of Neurology (T.D.H.-P.), Drexel University, Philadelphia, PA; Department of Neurology (E.C.L.), Baylor College of Medicine, Houston, TX; and Department of Neurology (L.M.), University of Pennsylvania, Philadelphia, PA.

Address correspondence and reprint requests to Dr. Zachary Simmons, Department of Neurology, H037, Penn State College of Medicine, 500 University Drive, Hershey, PA 17033; e-mail: zsimmons{at}psu.edu

Background: There is no generally accepted instrument for measuring quality of life (QOL) in patients with ALS. Current instruments are either too heavily weighted toward strength and physical function or useful for the evaluation of individuals but of less utility in assessing large samples.

Objective: To develop and evaluate the psychometric properties of an ALS-specific QOL instrument (the ALSSQOL) that would reflect overall QOL as assessed by the patient and would be valid and reliable across large samples.

Methods: The ALSSQOL is based on the McGill Quality of Life Questionnaire (MQOL), modified by changes in format and by adding questions on religiousness and spirituality, items derived from interviews with ALS patients, and items identified from open-ended questions administered during the MQOL. The psychometric properties of the ALSSQOL were assessed by a prospective multicenter study in which participants completed the ALSSQOL, other instruments measuring overall QOL, and instruments assessing religiousness, spirituality, and psychological distress.

Results: A 59-item ALSSQOL was developed; 342 patients evaluated its psychometric properties. Completion time averaged 15 minutes. Forty-six items loaded on six factors. The ALSSQOL demonstrated concurrent, convergent, and discriminant validity for the overall instrument and convergent validity for its subscales. Analysis of individual items permitted insight into variables of clinical importance.

Conclusions: This new ALS-specific quality of life instrument is a practical tool for the assessment of overall quality of life in individuals with ALS and appears to be valid and useful across large samples. Validation studies of a shortened version are now under way.

Additional material related to this article can be found on the Neurology Web site. Go to www.neurology.org and scroll down the Table of Contents for the November 14 issue to find the title link for this article.

Supported in part by the ALS Association Greater Philadelphia Chapter, the Zimmerman Family Love Fund, and the MS Hershey Neuromuscular Disease Research Support Grant.

Presented in part as an abstract at the 15th International Symposium on ALS/MND, Philadelphia, PA, December 2004.

Disclosure: The authors report no conflicts of interest

Received February 21, 2006. Accepted in final form July 10, 2006.




This article has been cited by other articles:


Home page
 NeurologyHome page
M. R. Rose and J. Weinman
Quality of life: Listen to, change, or shoot the messenger?
Neurology, April 3, 2007; 68(14): 1095 - 1096.
[Full Text] [PDF]


HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS
Copyright © 2006 by AAN Enterprises, Inc.