Individualised Neuromuscular Quality of Life (INQoL)
Click the buttons provided below to view information contained in a specific part of this record:
|
General Information
|
| Objectives |
|
This is a neuromuscular disease specific quality of life measure for adults.
|
|
| Category of Outcome Measure |
|
| Disease Type |
| |
Used |
Validated |
| Neuromuscular Junction |
|
X |
| Muscle |
|
X |
|
|
| Chronology of Development |
|
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.
|
|
| Mode of Assessment |
Self administered on site
Self administered off site
Administered by untrained evaluator
|
|
| Age Group |
Adults (16 Years and Over)
|
|
| Languages |
| |
Original |
Definitive Validated Translation |
Informal Translation |
| English UK |
|
X |
|
| English US |
|
X |
|
| French |
|
|
X |
| Italian |
|
X |
|
|
|
| Conditions of Use and Contact Information |
| Conditions of Use |
Free Access
Payment of Academic/Non Profit Research Fee
Payment of Profit Fee (Commercial/Pharmaceutical)
|
|
| Copyright Owner |
|
Rose,M. and King's College Hospital
|
|
| Postal Address |
|
Mapi Research Institute
27, rue de la Villette
69003 Lyon
FRANCE
|
|
| Phone |
|
P +33 (0) 472 13 65 75; F +33 (0) 472 13 66 82
|
|
|
|
|
Questionnaire/Scale
|
| Domain Name / Number of Items |
|
1 treatment impact domain
|
|
| Additional Format Information |
|
INQoL was orignally validated for muscle diease and myotonic disorders. In its current version it has also been use for myasthenia gravis. There are versions with additional symptom impact scores for diplopia, ptosis and dysphagia undergoiung evaluation at the moment.
|
|
| Total Score |
Yes - total score is calculated.
|
|
| Total Score - Range/Direction |
|
0 = worse to 100 = better
|
|
| Sub-Score |
Yes - sub-score is calculated.
|
|
| Sub-Score Range/Direction |
|
4 symptom impact scores for weakness, fatigue, pain and locking(myotonia); 0 = worse to 100 = better
|
|
5 QoL domain scores for 0 = worse to 100 = better
|
|
1 overall QoL score; 0 = worse to 100 = better
|
|
2 treatment effect scores (positive and negative); 0 = worse to 100 = better
|
|
|
|
|
Reference 1
|
| Reference Details |
|
Vincent KA, Carr AJ, Walburn J, Scott DL, Rose MR. Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology 2007 Mar 27;68:1051-1057.
|
|
|
|
|
Reference 2
|
| Reference Details |
|
Seyedsadjadi R, Rose MR, Weinman JA, Pandya S, Jackson C, Kissel J. The Relative Contributions of Disease Severity, Mood and Illness Perceptions on the Quality of Life of Those with Muscle Disease. Neurology 2008;70
|
|
|
|
|
Reference 3
|
| Reference Details |
|
Rose M, Brooks V, Walburn J, Sanders D, Pandya S, Kissel J et al. Validation of the UK Individualised Neuromuscular Quality of Life measure for use in the USA. Neuromuscular Disorders 2006; 16 supplement: S176 (Abstract
|
|
|
|
|
Reference 4
|
| Reference Details |
|
Validation of a quality of life measure for myasthenia gravis. Rose M, Brooks V, Walburn J, Sanders D, Pandya S, Kissel J et al. Neuromuscular Disorders 2006; 16 supplement: S152 (Abstract).
|
|
|
|
|
Reference 5
|
| Reference Details |
|
Rose M, Weinman J, Pandya S, et al. Determinants of quality of life in adult muscle diseases. Neuromuscular Disorders 2007 Oct;17:867-868.
|
|
|
|
|
Reference 6
|
| Reference Details |
|
PROQOLID: INQoL Information
|
|
| Other Information |
|
This is the PROQOLID webpage for the INQoL. It contains summary information about INQoL and links to other related information.
|
|
|
|
