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 Google Scholar
Google Scholar
Right arrow Articles by Vincent, K. A.
Right arrow Articles by Rose, M. R.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Vincent, K. A.
Right arrow Articles by Rose, M. R.
Related Collections
Right arrowRelated Article
NEUROLOGY 2007;68:1051-1057
© 2007 American Academy of Neurology

Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL)

K. A. Vincent, PhD, A. J. Carr, PhD, J. Walburn, MSc, D. L. Scott, MD, FRCP and M. R. Rose, MD, FRCP

From the Departments of Neurology (K.A.V., J.W., M.R.R.) and Rheumatology (A.J.C., D.L.S.), King's College Hospital and the Guy's, King's and St Thomas' School of Medicine, King's College, University of London, UK.

Address correspondence and reprint requests to Dr Rose, Department of Neurology, King's College Hospital, Denmark Hill, London SE5 1RU, UK; e-mail: m.r.rose{at}kcl.ac.uk

Background: Because there is no muscle disease specific measure of quality of life (QoL), we wanted to develop and validate an individualized muscle disease specific measure of QoL for adults suitable for both clinical and research use.

Methods: A literature review exploring QoL and its measurement resulted in the development of a theoretical model of QoL. This was used alongside qualitative interviews (n = 41) and a postal survey (n = 252) to design a questionnaire. The psychometric properties, validity (n = 95), reliability (n = 40), and responsiveness (n = 25) of the scale were assessed.

Results: The Individualized Neuromuscular Quality of Life questionnaire (INQoL) consists of 45 questions within 10 sections. Four of these focus on the impact of key muscle disease symptoms (weakness, locking [i.e., myotonia], pain, and fatigue), five look at the impact (degree and importance of impact) muscle disease has on particular areas of life, and one section asks about the positive and negative effects of treatment. The questionnaire is structured to allow for variations in the individual characteristics that influence quality of life. Psychometric evaluation established construct validity and test–retest reliability. A preliminary assessment of responsiveness was obtained.

Conclusions: The Individualized Neuromuscular Quality of Life is a validated muscle disease specific measure of quality of life developed from the experiences of patients with muscle disease and can be used for individuals or large samples.

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 March 27 issue to find the title link for this article.

Funded by the King's College Hospital Joint Research Fund.

Disclosure: The authors report no conflicts of interest.

Received March 28, 2006. Accepted in final form November 27, 2006.


Related Article

March 27 Highlights
Neurology 2007 68: 972. [Full Text] [PDF]





HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS
Copyright © 2007 by AAN Enterprises, Inc.