Duchenne Muscular Dystrophy Quality of Life Measure (DMD QoL)
The DMD QoL is the first condition-specific preference-based measure of health-related quality of life (HRQoL) in people with Duchenne Muscular Dystrophy (DMD).
Background
The DMD QoL can be used in cost-effectiveness evaluations of new healthcare interventions. It is the product of a study which featured input from a multidisciplinary team working with the charity Duchenne UK, clinicians, patients and primary caregivers of people with DMD.
The DMD QoL is a 14 item questionnaire available as a patient reported version and a proxy version.
Read more about the background of the DMD-QoL here.
Preference based utility measure
A preference-based measure for capturing the quality of life of people with Duchenne muscular dystrophy (DMD) from the DMD-QoL is also available and can be used to generate QALYs for people with DMD. QALYs can then be used to inform economic models of the cost-effectiveness of
interventions in DMD. You can find our more about the DMD-Qol -8D via the relevant publication or under “Key References”.
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The DMD-QoL has a hierarchical (or ‘higher-order’) factor structure, with 3 lower-order factors (physical, social, and psychological) and 1 higher-order factor (overall quality of life [QoL], comprised of the 3 lower-order factors).
A simple, summative scoring system is proposed for each of the 3 lower-order factors, and consequently the higher-order factor (QoL) being a composite score of these.
Higher scores represent a more positive QoL (overall or within each subscale).
The DMD-QoL-8D is also available to licence and is a preference-based measure that can be used to generate utility values to produce quality-adjusted life years (QALYs).
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This work was supported by Duchenne UK under the Project Hercules funding stream.
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The DMD-QoL is to date validated for pen and paper completion. Careful migration to a digital delivery format (for example screen based device) can be authorised. Please contact us for advice.
Validated Therapeutic Areas:
Duchenne muscular dystrophy
Research Team:
Dr Philip A Powell
Dr Jill Carlton
Dr Donna Rowen
Fleur Chandler
Prof. Michela Guglieri
Prof. John E Brazier
Dossier Extracts:
Key References:
Date Added:
05/04/2021