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Cited by 168Neurogenetic and Muscular Disorders ResearchHealth Systems, Economic Evaluations, Quality of LifeHealth Education and Validation

The DOI matches its Crossref record; 32 of the 33 references it cites were found in a registry or an index.

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

Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., Rose, M. R.·2007·Neurology
DOI 10.1212/01.wnl.0000257819.47628.41
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Abstract

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.

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Research works printed but not linked: 1

  1. Jaeschke R Guyatt GH. How to develop and validate a new quality of life instrument. In: Spilker B ed. Quality of life assessments in clinical trials. New York: Raven Press 1990:47–57.

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Metadata

Authors
Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., & Rose, M. R.
Affiliations
University of London (GB)
ORCID
Venue
Neurology
Publisher
Ovid Technologies (Wolters Kluwer Health)
Published
2007-03-27
Volume
68
Issue
13
Pages
1051-1057
ISSN
  • 0028-3878 (ISSN-L)
  • 1526-632X
DOI
10.1212/01.wnl.0000257819.47628.41
OpenAlex
W1968243270
Cited by
168
References
33
Citations by year
2026: 3 · 2025: 6 · 2024: 12 · 2023: 15 · 2022: 12 · 2021: 11 · 2020: 10 · 2019: 7 · 2018: 10 · 2017: 6 · 2016: 9 · 2015: 11 · 2014: 6 · 2013: 13 · 2012: 9
FWCI
3.07
Type
journal article
Language
en
Open access
closed
Locations
  • Neurology (publishedVersion)
  • PubMed (publishedVersion)
  • Research Portal (King's College London) (submittedVersion)
Topics
  • Health Sciences › Medicine › Genetics (clinical) › Neurogenetic and Muscular Disorders Research
  • Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
  • Health Sciences › Nursing › Research and Theory › Health Education and Validation
Keywords
quality of life, neuromuscular disorders, questionnaire development, psychometric validation, construct validity, test-retest reliability, responsiveness, muscle weakness, myotonia, myalgia, fatigue, patient-reported outcomes
MeSH terms
Activities of Daily Living, Adult, Aged, Aged, 80 and over, Mental Disorders, Body Image, Disability Evaluation, Female, Humans, Interview, Psychological, Male, Middle Aged, Neuromuscular Diseases, Predictive Value of Tests, Psychometrics, Quality of Life, Surveys and Questionnaires, Reproducibility of Results

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