Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL)
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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The Individualised Neuromuscular Quality of Life Questionnaire is a 10-domain, validated muscle-disease-specific questionnaire to measure quality of life.
“The INQoL is a 10-domain, validated MD-specific questionnaire to measure QoL.35”
Using data from Vincent et al, an effect size of 0.5 equates to between an 11.5-point and 15.8-point difference on each of the Individualised Neuromuscular Quality of Life Questionnaire domains.
“Using data from Vincent et al,35 this equates to between an 11.5-point and 15.8-point difference on each of the INQoL domains.”
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- Authors
- Vincent, K. A., Carr, A. J., Walburn, J., Scott, D. L., & Rose, M. R.
- Affiliations
- University of London (GB)
- Venue
- Neurology
- Published
- 2007-03-27
- Volume
- 68
- Issue
- 13
- Pages
- 1051-1057
- ISSN
- 0028-3878 (ISSN-L)
- 1526-632X
- 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 › Neurogenetic and Muscular Disorders Research
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Social Sciences › Education › 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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